In the last few weeks, I have entertained leaving the CHD community for good.  I never thought I would feel that way and truthfully, that’s why I’m writing this blog–because I hope that somehow this can make the difference we all need.

I read once that Christian’s are the only ones who shoot their wounded but I’ve discovered that statement simply is not true because I’ve watched the ready-aim-fire taking place in the most unimaginible place ever.  HERE.  In the CHD community.  I’ve watched battles for territory, proprietary rights & people who flat out refuse to unite with one another because of any myriad of differences.  I’ve watched as people refused to support each other because their kid is an angel while someone elses’ kid is a warrior.  I’ve watched adult survivors who fight with parents and parents who fight with each other and…I’ve shaken my head in shock at times while at other times been heartbroken.

I don’t understand this.  I really don’t.  I totally understand that we all have a different experience but guess what?  We’re STILL all fighting the same enemy.  We’ve all grieved, we’ve all lost sleep, we’ve all had fear, we’ve all had nightmares, we’ve all lost friends & family and we’ve all faced this bastard that keeps killing & hurting our kids.  Your pain is different than mine but that does not make either one of our pain any less valid.  My CHD child is alive, thank God but the truth is, most of us with CHD warriors live with the blood-chilling awareness that the end could come at any time.  Does this make our pain less than someone who lost their child after only a few days?  Who knows?  Who can tell?  Does it really matter?

What I do know is this.  We’re in this together, no matter what our particular stories.  One of my favorite quotes is ‘be kind for everyone you meet is fighting a hard battle” and that would be no better applied than here.  We may disagree with one another but here’s the challenge I am issuing from one heart parent to the rest:

Let’s be kind to one another.  We don’t always have to agree but we should always respect other’s because we just don’t now what this journey has cost them.  If we don’t agree, we will keep it private and between us and will not bring the entire community into it (i.e. mass messages & status updates slamming other parents).  If we can’t solve the problem, we will just agree to disagree without making a huge fuss about it.  We will understand that many of us are WOUNDED, TRAUMATIZED & may be acting out of our own pain.  We will not judge it, but we will offer as much help as we can and if we can’t offer help, we will at least not offer more pain.  The truth is, many people in this community are fragile & we don’t know what could be the “last straw” or the thing that pushes them over the edge.  God forbid that should come from any of us.

A kingdom divided can’t stand, friends.  Is it any wonder we see very little progress in CHD awareness when the community members are shooting their wounded?  It’s time to lay down our weapons that have been directed at each other and start aiming them where they should be…at Congenital Heart Defects & bringing awareness, impacting lives and helping other families.

With love,

Lisa Basquez

Founder & President

Gabriel’s Gift

www.gabrielsgift.net

Since Natalie was diagnosed 3 years ago with a serious heart problem, we did our best to filter out any negative and scary stories about other families. Once I read from a support “buddy” who had lost her child to CHD on my old Myspace page that said “Natalie may not make it..you have to accept that.” I don’t think that she was trying to be mean and clearly she was going through a really tough time..but that wasn’t what I needed to relate to at that point. I needed something other than talk about how my child will die. Death was something I acknowledged as a possibility and to this day I still have to, but I really needed stories of survival..or at least those going through exactly what I was going through…what Natalie was going through. Because let’s face it, it’s not just all about me. At all.
It’s horrible that you have to filter it..but to stay sane and strong for your child and for yourself, you have to surround yourself with something you can assimilate with.
We needed to somehow positively focus on our child..our child who was like a ticking time bomb every day for 5 whole months until she received her first open heart surgery- the Glenn Shunt.

Before Natalie had her first repair, we struggled to feed her. I remember sitting for hours getting her to drink an ounce of formula. In the middle of feeding she would just fall asleep and seemingly have no interest in eating. I remembering spending countless hours documenting her feed schedule, crying, and just feeling so horrible that my new baby was so tired, and so tired that she couldn’t eat. I didn’t blog about it. I didn’t talk much about it. I was way too scared to freak everyone else out. We mentioned some slightly unsettling aspects of what was going on and my mom-in-law called worried that Natalie was dying. Neither Rick or I could scare anyone.
I pretty much just focused on the positive with this blog and tried my best to not compare Natalie to James as a newborn. I was quickly learning how different they were and coping with that. Let’s face it, we were extremely lucky to have first experienced a “heart healthy” baby.

And then one day it all came together.
As soon as we were so scared and worried and desperate for answers, every doctor (and many of them have come and gone for sure) helped us get through it. They helped us prove that there were reasons behind our worries. We weren’t going crazy. As soon as everyone noticed a dip in her weight and received her heart diagnosis when Natalie was about 3 weeks old, we increased her caloric intake which was more powdered formula and less water. As with that, our cardiologist noticed that she arched her back when she fed. “She has acid reflux”, our Hopkins pediatric cardiologist stated and quickly sent us home from a heart checkup armed with a prescription of Zantac. So, there were 2 reasons for Natalie’s strange eating habits. And sure enough, not long after beginning her medicine, Natalie was still a sleepy eater, but she was a chunky sleepy eater. She packed those ounces on fast and everyone, especially her daddy and I, were so SO happy. I couldn’t keep up with her growth spurts, but it was a joy to worry about getting her new clothing at the last minute.
Every weekly weight and pulsox check up until her 4th month went well. She was growing and growing and her oxygen saturations stayed in the low to high 90s, which was always remarked as “amazing and interesting” by our Hopkins team. To be honest, I’m still blown away by that too. When we were close to finally getting fitted in for her Glenn Shunt operation, it came almost too late. Her blue and purple spells were so frequent and once again, she was struggling to eat. But out of all of that, Natalie skipped the BT Shunt altogether and it was a surprise to everyone. Because you never know when that bomb will explode and unleash some serious trouble. Natalie’s heart condition carried on without much of a hitch but at any time her ASD could have closed and Natalie wouldn’t be with us. The Atrial Septal Defect that usually comes standard with Tricuspid Atresia needed to stay open for her to survive. Granted, she was so closely monitored that something detrimental to happen was less of a chance, thank god. But there was still a huge chance that she would have suddenly passed away.
I don’t like to talk about that. I hardly ever talk about that. I hate it.

No one wants to even think about the possibility of a major organ inside of their child suddenly ceasing to work. We didn’t mention it much to our family or friends because to us, death wasn’t going to be an option. We were going to fight with every tooth and nail to make sure that Natalie would be okay. Sadly, many parents do that and still lose their child. That’s why this battle with heart defects is so complex and leaves you a bit powerless. The weight of your child’s health rests on your shoulders and you have no idea how it all will pan out.
Every time I look at Natalie I see a miracle. I see a kid who, yes has a life expectancy that’s uncertain, but so does every child– heart healthy or not. It’s easy for me to say that. I know. My child is alive and has handled everything she’s been put through with no complications. Why my child is one of those without any complications I don’t know. I just can’t feel guilty for that anymore. I just can’t.
Most parents who endure the long road of severe CHD with their child (or children) are supportive to us no matter who we are or who our child is. There are some, however, that don’t want to have much to do with your support if your child doesn’t have an almost identical heart problem and that’s what makes me the most sad.
It can be a slightly discriminating world out there. I’m sure the same goes for those looking for support for their child battling cancer.
“Oh, your child has skin cancer? Oh..well mine has brain cancer, therefore you don’t understand.”
And you can’t really get mad at people like that. You just can’t because most people understand that a kid with cancer of any kind is ..well… A KID WITH CANCER..dear god. Plus, how we all cope with such a severe disease can have anyone unintentionally offending others.
Most do not care one tiny bit if your child has HRHS (such as Natalie) as opposed to their child battling HLHS. Most do not hold it against you that their child was in the hospital recovering from open heart surgery for months compared to my child that spent almost a week. Most heart parents don’t mind chatting with you if your child doesn’t need a heart transplant even if their child needs one. As a matter of fact, many parents (with me included) with be right there along with you celebrating each milestone to recovery and staying healthy..well as healthy as any heart kid can be. An RSV or flu free winter for a CHD kid, alone, deserves a celebration.
A kid with any type of CHD is.. well.. A KID WITH A CHD. I completely “get” that some heart defects are technically more severe than others. I totally understand that some kids need more surgeries and medication than others. But to be discriminatory in your support system is beyond my comprehension at this point.

Parents who have lost their child are in, what I like to call, across that “acceptable” divided line. They are across that line because they are dealing with something so severe and life-altering that no one should say they understand unless they have lost a child, too. I can’t completely relate, but these parents don’t want me to because it’s so unimaginably difficult and this is a guess..but I think the last thing they’d want to hear or read about is another little child passing away in another family. There’s such a deep level of respect that I have for heart parents who have lost a child..that it’s hard to measure or even put it into words.
I want to hug every one of those parents so bad…
When I hear of another child passing due to CHD complications I just can’t bare it. I can’t stop thinking about that family and I do my best to pray for them, regardless of how “non religiousy” I am.
I can’t ever say that I completely understand what they’re going through. But what still brings us all together is that we see how scary the CHD world is and in reality, we are all in this together. If we don’t do that for ourselves, we have to do it for the kids.

I can’t ever apologize for how well Natalie has always done. I just can’t and I definitely won’t. She is a small child born with a complex heart that she didn’t ask for. Every open heart surgery..every heart catheterization and every test that she’s had deep anxiety over and still endured has brought her to where she is today. Alive, kicking, and as feisty as ever.

It’s amazing as a Mom to a CHD Child what we find out that we already know! We keep hearing Kimmy is Medically Fragile. Yes she is still in away but she is more stable now then when she was first born we should know we sat with her day and night while she was heavily sedated to keep her heart strong. She was so unstable then not now. She was  listed as failure to thrive and still wears that label too but she’s thriving in her own way!!  We are trying to let Kimmy experience everyday things any child would like to do even if it’s outside crawling through a splash station. She will get a scrape a bruise but if she’s not crying and is not affected by it then why interrupt her joy her happiness of chasing her sister?? Yes Kimmy is still small and will always be a CHD Warrior but she needs to be normal and live she needs to feel the sand in-between her toes to be able to splash in a swimming pool. We as her parents agreed to let Kimmy experience all she can and to treasure every moment. Tell me how you can say Kimmy isn’t normal!! She is normal she wants to do things she has feelings she fears she cries she’s gone through so much that she doesn’t understand now but eventually she will be on top of the World. She will take that extra chance just because you can’t live with what if or I should of. Kimmy’s so strong willed and determined to do everything now we can’t limit her she’s trying to be a child and we are going to let her. CHD is only a part of our life it’s only a part of Kimmy. Unfortunetly CHD physically effects her heart but her spiritand personality show no signs of it.  CHD is always going to be there we know that and only time will tell if  DR P will be able to reconstruct her heart naturally or with artificial parts. Kimmy’s very lucky that she has been able to come out with very little delays or set backs. CHD is so misleading to people who read the text books but don’t look at the Children and Adults thriving.  Don’t sentence my Kimmy to a plastic bubble because you think she shouldn’t be doing things. She will never say I can’t do that because I have a CHD she will say Yes Iwill try it. Probably shouldn’t say this but My CHD Child is going to beat up your “normal”" child. I swear I need that on a bumper sticker or T Shirt to wear when some of her social workers come over. We know Kimmy is sick but to us she’s not she’s not in the hospital on a vent No NG tube no changing colors no gasping for breaths she’s Healthier and a lot better.  We still have the   to get through the Fontan but we don’t dwell on that we dwell on us being a family with happy kids and taking lots of pictures and making lots of memories. Isn’t that what you are suppose to do??  My first pictures of Kimmy that we took were when she was in NICU with maybe four wires and she was awake. I was asked why would you take pictures of that? With all those wires??? That’s my baby with all those wires and what if that I never had a picture of her because I waited till all the wires were gone. We know how serious this was we seen Kimmy getting bagged and suctioned every 20 minutes some days we were there holding our breath waiting crying  praying for it to be over and Kimmy to be stable. Just because you might have a degree doesn’t mean that you fully understand a diagnosis especially when your degree is not a doctorate. You will never understand you will never be able to say anything but I didn’t know there was so much   to deal with. What do you think when we live in one town and we have to travel almost two hours depending on traffic to get to Chicago the only place that will treat Kimmy. It’s not easy but we have things planned just incase we go into Kimmy mode we shuffle this and that and manage. I thank God that all we have had to deal with is little colds and a fever and yes we probably should take her to her peditrican more but when she’s breathign funny we think we are saving time taking her to the ER because we don’t want her to be going to two different places then being transported that time is precious if it is life threatning. I know most people don’t think of that but when you learn CPR when you sit with your baby and things are so unsure you learn that it only takes a second for things to change. We kept her out of  Daycare because that’s what the Drs wanted so we deal with the seperation anxiety and people wonder why we can’t even leave her sight. I wish that this wasn’t the way things were but I will deal with Kimmy clinging to my leg at least she’s here. We are grateful to have her and we cringe when she gets labeled. Just so tired of  being reminded Kimmy has CHDs she’s medically Fragile she’s Failure to thrive we don’t see that any more! CHD will always be there lurking in the background but  most importanly she is our daughter Kimberly!

Riley is my life, so is my other kids. They are all so important to me but sometimes I wonder, do I do enough with my heart healthy kids as I do with my CHD kid? So many times I sit and think, and I neglecting my other kids? Do they understand why Riley needs more time than other kids?  The end of May, Noah one of my heart healthy kids had his tonsils and adenoids out.  One night we were talking and he said “so I am having surgery like baby Riley?”  ” Am I going to have to fly away and they fix my heart too?”  “That’s surgery”  I just explained about the types of surgery but it was then I realized even more that CHD affects the siblings just as much as parents.  We somewhat understand but kids don’t.  I decided to sit down with my other kids and explain Riley’s situation and some friends of ours with heart babies.  Of course my older one gets it but the younger are still apprehensive of doctor visits for Riley because they think I am going away with Riley to have more surgery.  I know they will understand one day but it is so important to explain to your kids CHD’s.  I have realized that CHD affects EVERYONE in the family.  Not just me, or Riley, but my kids too….

I found out i was pregnant with Miguel when  was 4 months pregnant. I got my first ultrasound at 23 weeks pregnant. Everything was going great we found out we were having a  boy nd were super excited since i already have a girl. The ultrasound was taking a little longer than my daughters nd they were focusing a little too long on his heart but i didn’t think much of it. Before i left they said that my doctor wold give me a call within a week to discuss my ultrasound. I received the call 4 days after the ultrasound nd they said i had an appointment for a fetal echo at the university of IL. i had never even heard of a fetal echo. they said they saw a 3 chambered heart i was so worried but the doctor said that we shouldn’t worry until we have the echo because sometimes the baby isn’t positioned well enough to see the whole heart. So i went to my appointment nd cried my eyes out when they told me that he had a heart defect. it was devestating to hear because u don;t kno who to blame nd all i could do was blame myself. after many echos they said his defect was TGA(transposition of the great areries) they said he”d need one surgery with a possibility of a 2nd one. at 36 weeks pregnant they decided to do another ultrasound. they decided to admit me in the hospital because they felt Miguel wasn’t growing. after being in the hospital for 3 days they induced my labor on Monday March 29th,  after 28 hours in labor Miguel Angel was born. March 30th 2010 at 9:53 weighing 5 lbs 1 oz  nd 18 1/2 in long. they took him away as soon as he was born he was in the NICU it was so hard leaving the hospital without him. I’m a college Student nd i have a daughter i had to tend to as well but i went Every Day to see him even though it was a long ride there. after doing his first echo they realized he didn’t have TGA he had a DILV (double inlet left ventricle). instead of having 1 surgery he’d have 3! It was so devastating to hear that.  on Sunday April 3rd they told us he’d have his first Surgery which would be the PA banding on April 8th. He was transferred from the University if Illinois on Tuesday April 6th. he had his surgery on Thursday April 8th. his surgery was suppose to last 4 hours, they finished in 2 because once they went in they found out they didn’t have to fix his aorta it managed to fix on its own. (miracle). he did so well after his surgery. he recuperated from it in a week he was discharged on Thursday April 15th. Hes been home 2 weeks already nd hes doing great. we are still waiting to find out when he will be having the Glenn surgery. its scheduled for 3 months from now. we pray for a miracle.

Dear my little man man,

Mommy decided to write you a letter telling you all about your time on this earth and what a great joy you brought to me. I am going to try and include as many details as I possibly can. It has been almost 7 months since you gained your angel wings.

March 2008, I found out I was pregnant. I was so elated. Mommy and Daddy had been trying to have another baby for several months and it had finally happened. You see, Mommy got very sick after your big sissy was born. When she was 6 months old, I was diagnosed with a rare blood disorder, ITP. It devastated our lives. I was very sick for a long time. Then I had some surgeries and it fixed the problem. After I was cleared to try and get pregnant, we tried. We tried everything. Then it finally happened. But then Mommy had a miscarriage. Our world crashed or at least we thought it had. We wanted that baby so badly. On April 22, they told me that the baby was gone and that my body had already began to reject the baby so it would go naturally. I was emotionally scarred. The doctors told Mommy not to try and get pregnant for a while. So we didn’t. But on April 21, the night before they told me the baby was gone, daddy and I made you. You were our miracle from the beginning. Mommy’s doctor told her that he had heard about women getting pregnant while still pregnant in medical school. But he had never seen it actually happen. It happened to your mommy. On May 22, I found out I was pregnant, with you. I was given the due date of January 27, 2009.

I was overjoyed and scared. I was so paranoid that I was going to lose you too. I didn’t know if I could handle it. The pregnancy with you was both easy and hard. In the beginning I was paranoid, but never suffered from the slightest bit of morning sickness. Then I began to show off a baby bump in the third month. I thought it was kind of early to be showing, but the doctors assured me that it was because you were my second baby. I blew it off and went back to enjoying being pregnant with you. Feeling your kicks and punches and rolls was the most amazing feeling. I remember when Dr. Baugh told me that you were going to be a big baby, maybe 9 pounds, and that I might have to have a c-section because of your size. I was excited. I like chunky babies. Then we had the sonogram to determine your gender. I was convinced you were a boy, because the pregnancy was so different than with your sister, Samantha. My gut instinct was right. I was going to have a little Donald Michael-Evans Thomas. I was so happy.

I must explain to you were I got your name. You see, you are named after all of the influential men in our lives. Donald is Mommy’s daddy. Your papaw had no sons and no brothers. So I named you as his namesake because you were his first born grandson. Michael is your godfather’s middle name. The name he goes by. Your daddy and he are best friends. Evans is a generational name on your daddy’s side. Your Paw, Daddy’s father, is named Joe Evans. Your great grandfather was Evans Thomas and your uncle is Joe Evans Jr. You were the first born grandson on that side too, so we named you Evans to carry on the family name. Thomas, your last name, is your Daddy’s last name. The name I took on the day we wed, and would have ended with your daddy, if you hadn’t been born.

The months of pregnancy seemed to come and go, until the last couple of months that I was pregnant. Mommy had an irritable uterus, which caused me to have contractions every few minutes that did not cause labor. I was in and out of the hospital being monitored for pre-term labor. It was a nightmare. The contractions hurt and I couldn’t get comfortable. Daddy tried everything he could to help me, but I just had to grin and bear it.

After I started going to the doctor every week, they noticed that I measured a few weeks further along on fundal height (height of uterus). The doctor ordered another sonogram. You were measuring a little overweight, so they told me, yet again, that you were going to be a BIG baby. At 34 weeks I was measuring 38 weeks. At 35 weeks I measured 41 weeks. At 36 weeks, Dec. 31, I measured 52 weeks. Mommy’s doctor thought I had a tumor on my uterus because I grew so much in only a week. So off to the sonogram room we went. The tech said that I had way too much amniotic fluid and that if they didn’t get you out soon, you would be suffocated. All of this because my uterus had grown to its maximum capacity and the fluid was continuing to build up.

The doctor sent Daddy and I to the hospital in preparation for your birth, 4 weeks too early. I must insert a sort of joke here. All throughout my pregnancy, Daddy told me I had to have you on Dec. 31 so that we could claim you on our taxes for that year. I kept telling him it wasn’t going to happen. That it was too early and that he could forget it. The day you were born, I told daddy that it didn’t look like he was going to get his wish. However, you had other plans and sided with your Daddy. You and he had a special bond and you took his side. You were born at 5:43pm, December 31, 2008.

After you were born, via emergency c-section, they wrapped you up and showed you to me. You were like an angel. So beautiful. Surely the most amazing baby I had ever seen. You weighed 6 pounds 7 ounces and were 18.75 inches long. You had the fieriest red hair I had ever seen.  You were so perfect. 10 fingers 10 toes. I kissed you on the forehead and you and Daddy left to go to the newborn nursery. Despite being born 4 weeks premature, you scored an 8 and 9 on your APGARS. While you went to the nursery, I was stapled up and wheeled into recovery. I was totally oblivious to the utter shock I was in for.

Just minutes after your arrival in the nursery, you stopped breathing and went into cardiac arrest. Your pediatrician did CPR, got you intubated, stabilized your heart with meds, and called for a transfer to the Neonatal Intensive Care Unit 130 miles away. He performed several tests on you including the newborn swallow test. Nothing went into your stomach and he could hear air in your tiny tummy every time the respirator gave you a mechanical breath. He attributed this to a possible connection of your trachea and esophagus. He also did an EKG to determine your heart rhythm. He heard and saw a heart murmur and gave you a shot of medicine in case it was something more serious. We would later find out, that shot saved your life.

As I was being wheeled down to my postpartum room, I noticed everyone in the hallway. Not down at the nurse ogling over your handsomeness. That was my first trigger that something was wrong. As we entered my room, your pediatrician and my obstetrician came in to talk to me. My heart began to race. Questions flooded my mind. I just wanted you. I wanted to hold you, look at you, smell you, comfort you, feed you, do all the things a mother wants to do for her newborn. All of those things were stripped away from me.        

You pediatrician started the world stopping conversation by telling me that you were leaving to go to the NICU and I couldn’t go. He told me that he suspected you had a connection between your esophagus and trachea and that it was causing you to not be able to oxygenate your blood properly. He also told us that you might have a Congenital Heart Defect, but he wasn’t sure. He told us about the EKG and the shot that he gave you just in case. Then my OB told me that when the flight team got you situated, they would bring you down so that I could see you. I couldn’t hold you, I couldn’t smell you, I couldn’t hear you, all I could do was touch your tiny fingers and pray that I would see you alive again. Daddy and his mom drove to be with you at the NICU and my mom and I stayed behind.

I was so out of it, so shocked, and so scared that the only question I could think to ask was “what do I do? I wanted to breastfeed.” The answer I got from the doctors was to pump and bring it with me when I was discharged. So I did just that, I pumped for you. I did it rigorously. Every 2 hours. Your Granny and I would wake up and pump. I would look at your pictures on my phone for inspiration. You were fighting for your life 3 hours away and I was doing the one thing I could do, pump.

After 3 days, I was discharged. Granny and I went to our house and got some clothes and a few other essentials and started on our journey to see you. We prayed so much over those few days. Little did we know that wouldn’t be all the praying we would be doing. While in the NICU, you were diagnosed with a Tracheal Esophageal Fistula (TEF). Your esophagus never touched your tummy. It grew down and closed before it got to where it was supposed to go. You had a third tube off of your trachea that grew to your stomach. So, in essence, when you swallowed, nothing happened and when the respirator gave you a breath, half went to your stomach. This caused your oxygen saturation to be lower than normal. You were also diagnosed with Tetrology of Fallot with Pulmonary Atresia. All those big words meant that there were several things wrong with your tiny heart. Both of these things required surgery. Neither could be done where you were.

At 6 days old, you took your first airplane ride, in a UBA medical jet to Washington DC. Daddy and I flew out the next morning to join you in our nation’s capital and the land of hope for us. The day after we got there, you underwent your first surgery to repair the TEF. The day of your surgery, Jan. 8, you weighed 5.5 pounds. You still had a head full of fiery red hair, the cutest toes and fingers, and the darkest blue eyes I had ever seen. Your surgery took about 2 hours and you pulled through like a champ. No complications during surgery and all was repaired. That gave us a shred of hope, but you still needed open heart surgery.

Over the course of the next 6 weeks, you battled several extubations, which led to reintubations, a collapsed lung, a severe leak from the suture site in your esophagus, several trips to the barium study, tons of pokes, and lots of medicines. All the while, you were receiving the drug that kept you alive, Prostaglandins. That was a name we came to know and to trust. This was also the medicine that you received in a shot at birth to combat any CHD that might have possibly been there. This was the shot that saved your life. It kept you alive until your OHS. During this time, you had an ECHO every day and made several trips to the cath lab. During one of these trips, your exact CHD was diagnosed. Double Outlet Right Ventricle with Pulmonary Atresia, a large VSD, a large ASD, and a leaky mytrovalve. You did not have a pulmonary trunk, the piece that comes into your right ventricle to take the blood to your lungs for oxygen. You had the pulmonary arteries and they were of normal size. However, because you didn’t have a trunk, your PDA was the only connection your heart had to your lungs. Prostaglandins hold this open. That is why it kept you alive. Had your PDA closed, you would have died.   

On February 10, 2009, a day that I will never forget, you underwent your open heart surgery. The first of many, we were told. You were a trooper. You defied all odds. Surgery lasted 4 hours, you pulled through. Everything requiring repair, received it. They were able to close your chest and you did not require ECMO (extended time on heart lung bypass) and no pacemaker. The next day, less than 24 hours later, you were extubated and taken off several medications. In less than 48 hours post-op, you moved to the floor out of the Cardiac Intensive Care Unit. I was overjoyed. My little man, who on the day of OHS weighed 4 pounds 12 ounces, was declaring to the world that he would live.

Then we were faced with our next obstacle, teaching you to eat. Of course, because of Mommy unrelentless pumping, you had plenty of the best milk to begin feeding on. You couldn’t nurse, but you definitely got the best milk you could get. You caught on very quickly and I imagine that if I had went almost 2 months without eating, I would catch on pretty quick too. Mommy was elated that her persistence in giving you the pacifier payed off. If I hadn’t been so adamant in you getting a paci, you wouldn’t have known how to suck. Eleven days after your heart surgery, we were discharged home. I was relieved to finally have my baby, but so scared because of all the care you required. Your big sissy, whom had not yet met you, was so excited that her baby brother was finally coming home.

The first few nights, I lied awake, paranoid. I would check on you every few minutes to make sure you were still breathing and because it felt so unreal to finally have you with me, where you were meant to be. When we arrived at our home, 1100 miles away from what had become our home; everyone was there to meet you. Your Nana, Paw, Papaw, Uncle Jeremy, Aunt Becca, Daddy Michael, Aunt Chasity, Stephanie, Andrew, and of course, your big sissy. She even had on her “I’m the big sister” shirt. After a few hours of everyone ogling over you, like they should have done when you were born, everyone went their ways and the four of us (Daddy, sissy, you, and I) were left to finally settle into some normality.

The next 3 months were filled with doctor’s visits (130 miles away), needle pricks, weight checks, medicine changes, food plans, etc. It was hectic, but all worth it when you were home every day with us. The doctors were concerned about your weight all the time. They never seemed to be pleased that you would only gain a couple of ounces at a time. You weighed 6 pounds 1 ounce the day you were discharged from DC on Feb. 21. They began having me add calories to the breast milk. Even more and more every time we went to the doctor, until finally you were at 28 calories an ounce. You would take about 3 ounces every 3 hours and that stayed the same. You never wanted more. They would tell me to make you eat more, but you refused and I wasn’t going to force you to take it and risk aspiration. Then on May 21, you were admitted to the PICU (130 miles away) for dehydration and failure to thrive. At this time, 5 months old, you weighed 7 pounds 2 ounces.

You were in the PICU for 2.5 weeks all together. They stopped your lasix and pumped you with IV fluids. You got double pneumonia and ended up on Bi-pap. They also put in a NG tube for feedings and told me, your mom, that I wasn’t feeding you and that they would control that now. I was mortified and extremely ticked off. So I told them that there was something wrong with you and that if this was how they would finally figure that out, then great. They finally got my point when after receiving 1 ounce an hour at 28 calories an ounce, you lost a pound. It wasn’t me. Being so upset that they would dare accuse me of not feeding you, I told them that maybe I should get DHS involved because they weren’t feeding you, they got the point and no more accusations were made.

They put in a broviak because you had such small veins and they could keep IV access. I was ok with the broviak procedure. That was until they intubated you wrong and put the broviak in wrong. The wrong intubation caused you to go into respiratory distress and they could no longer feed you. They had also performed an ECHO that showed severe structuring of the artificial trunk they placed in DC. You needed a heart cath and soon. But because you were so small and they couldn’t feed you, they wouldn’t do the cath.

By this time, I was fed up with them playing the guessing game when it came to your care. You needed a G-tube placement and a heart cath, and they would do neither. I demanded a transfer back to DC and off we went. We got to DC on June 6, a mere 5 months since you went the first time. You were so very ill and so very tiny. The first thing they did was get you a g-tube so they could feed you. This was a surgical procedure. While in surgery they took out the broviak that no longer worked because of wrong placement. The broviak had quit working 3 days before we were transferred. However, they refused to take it out stating “we aren’t using it, let DC deal with it”. Needless to say you weren’t going back to that hospital.

Upon removing the broviak you became septic. Meaning the broviak, that the other hospital refused to remove, had gotten infected and the infection was now in your blood. This caused you to have a fever of 106 degrees. They gave you a dose of Tylenol and within 4 hours your core body temp was 88 degrees. You also started having bradiacardic episodes (low heart rate). So you were moved into the CICU for closer monitoring. You were slowly improving and there were talks of you moving back to the floor after a few days. But just like always, you had other plans. At 1:50am, while I was asleep at the Ronald McDonald House, you went into cardiac arrest. It took them about 20 minutes to get you completely stabilized. They called me after you were stable and granny and I headed to the hospital.

Your big sissy went with us to DC the second go around, so granny stayed in the waiting room with her because she was asleep. I came to the back, to see you. A sight, I shall surely never forget. You looked lifeless, pale, a slow heart rate, no movement. I would venture to say, you looked dead. I was so overwhelmed with emotion I just stood there and cried. Then it all happened again. At 4:00am, while I was standing at your bedside and you were getting an ECHO, I literally watched your heart stop. It was so hard to move back and let them work on you. This time was worse than the last. It took almost an hour for them to get you back. All the while, I was crying and talking to you. I would say “come on baby boy, do it for mama, don’t do this to me, bring that heart rate up, come on little man man”. One of the techs sat with big sissy so granny could be with your Mommy. I didn’t leave the room. I couldn’t. I wanted to be there, letting you know I was there.

After they got you stabilized, you were moved to a room closer to the nurse’s station. At 8am, after much prodding by your nurses, granny, big sissy, and I reluctantly went to the RMH to shower and get some food. We were back by 11am. As soon as we arrived back at the hospital, I was in your room. I didn’t want to miss a moment. I didn’t want to fathom not being there if it happened again. I had a right to feel that way, because it did happen again. I was standing at your bedside talking to you. I was holding your finger. Your eyes rolled back in your head and I knew, you were gone.

At 2pm, you went into cardiac arrest again. This time your heart rate was 2bpm. They called the code and I moved back as a plethora of doctors, nurses, and techs began the resuscitation process, yet again. This time, I really thought you were gone. They worked and worked and worked and worked. 2 hours, 2.5 hours, 3 hours…. Nothing. One of the nurses told the doctor that you were gone. When I heard it I literally fell. I was sitting down the whole while, but I felt as if at any moment, my life would surely end. But that doctor, that amazing man of wisdom, said “no, he is still in this, get me the Doppler” all was silent. Beep, 5 seconds, beep, 7 seconds, beep. “he has a heartbeat” “rapid deployment now”, orders from the doctor being shouted across the room. I held onto “he has a heartbeat”. But then I was confused. What was rapid deployment, what did that mean? I soon got my answer as I was ushered outside the doorway to watch, my tiny, lifeless, helpless baby; being rapidly deployed onto ECMO. Heart lung bypass, life-support. Without it he was dead. After he was stable, I was allowed in to see my black, lifeless, 5 pound baby laying there with tubes coming from his neck housing your blood. To see you completely still with one eye half open and rolled back into your head covered with red hair. That tiny quiver in your chest that we could see because your sternum had been opened, that told me you were still in there fighting. Your heart never completely stopped.

I have to honestly say, you looked you best that day. You spent 18 days on ECMO. After 6 days, your kidneys and liver failed requiring constant dialysis. You also had to go to the cath lab while on ECMO and they caused a bleed and your lungs filled with blood. The doctors took daddy, granny, and I into this tiny room, a consultation room. We knew what we were about to hear. The words we had dreaded were coming into fruition. “Your son is by far the sickest baby in the CICU. Possibly the sickest in the entire hospital. He has sustained serious damage to his lungs and kidneys. Some of which may be irreversible. Right now, he only has about a 2% chance of successfully decanulating off of ECMO. We need you, as a family, to decide if it is worth continuation of ECMO.” Wow. I was utterly speechless. I just cried, I did not want to let you go yet. I wasn’t ready. No one was.

So we did what you had taught us to do in your 6 months, we prayed. We got down on our knees and busted Heaven open looking for a miracle. We decided to let God determine your fate. For he holds the key to life and death in his hands. He held you in his hands, we were sure of it. We left you on ECMO. The next morning, June 20, your right lung opened and started getting air into it. A few days later, the left lung opened. You were now getting the ventilations into both lungs. You fought. On July 1, 2009, after 18 LONG days, you successfully came off of ECMO and dialysis. It was one of the happiest days of my life. My baby boy had survived. You suffered a stroke while on ECMO and lost your hearing, but you were alive. July and August were months of ventilators, medicine, 3 trips to the cath lab, 2 broncs, food through your g-tube, finally holding you again, physical and occupational therapy, many new medicines, new ways of doing things, and many many smiles.

Finally on Sept. 9, 2009, you were discharged after being in the hospital nearly 4 months. We flew home to Mississippi the next day. Your big sissy was already home because she had to start school. Your Daddy was so excited because he had been gone back home for a while. He flew to DC to meet us at the airport, then flew home with us.

Life after you came home was so different than before. Everything had to be sterile, no animals, you had a picc line for IV meds, a gj-tube for feedings, a feeding pump that ran continuously, a nebulizer, 7 specialists you had to see, home health nurse 3 times a week, physical, occupational, and speech therapy 3 times a week, and the limited movement you had on the left side. But boy was it sure good to have you home. I adjusted pretty quickly to having to do something every hour. Whether it be giving you a med, changing your feeding bag, giving you a breathing treatment, etc. I enjoyed every minute that I still had with you.

October 4, 2009, your Daddy left to go to Orlando, FL for training for work. Granny stayed with us to help me with you and big sissy. He called at 6pm and said he had just gotten checked in to the hotel and was going to get something to eat. It was time for your feeding bag to be changed so I did that and an hour later gave you one of your nebulizer treatments. I got big sissy in the bathtub and out and granny took her to bed. At 10pm I gave you your second breathing treatment and took a picture of you. You were holding onto the mask that delivered the medicine, I thought it was so cute. I turned on your angel care monitor (alarms if you stop breathing for 10 seconds) and climbed into bed to catch a few hours of sleep before it was time to get up again. At 1:00am, Oct. 5, your feeding pump went off indicating that you needed a new bag of milk. Granny heard it too so she got it and hooked it up. You smiled at her and she went back to bed. I was awake but not fully. I drifted back to sleep and was awakened at 1:15am by a sound I had prayed to never hear. Your monitor was going off. I immediately shot out of bed and checked on you. You weren’t breathing and no pulse. I screamed for granny and moved you to a flat surface and started CPR. I called 911 and they sent an ambulance. When the paramedics arrived, I gave them a brief history of your medical past. Then I lost it. I was not longer in control. Up until that point, I hadn’t cried, hadn’t panicked, hadn’t lost my train of thought, I simply did what I was trained to do in the hospital. After the control was taken away from me, emotions and panic set in. Granny had called everyone and Daddy was leaving the hotel to go to the airport to get a flight home. Daddy Michael and Aunt Chasity came over and Chasity stayed with your big sissy and the rest of us headed to the hospital. At 2:43am, Oct. 5, 2009, the declared you deceased. I experienced, what felt like an out-of-body peace. You see, while the paramedics were getting you ready to go, I prayed and asked God to carry me through this because holding His hand was no longer enough.

I won’t say to you that it didn’t hurt worse than anything I had ever experienced, that would be a lie. But to say to you that your passing was the worst thing that ever happened to me would also be a lie. I still, to this day, long to hold you, to touch you, to see you, to smell you. But you are no longer hurting. You will no longer spend months in a hospital. You will no longer have to endure pokes, tests, or surgeries. You are now pure and perfect. You were made whole. I cannot say to you that I don’t miss you every second of every minute of every day, but it makes it a lot easier knowing that one day I will hold you again.

You gave me the inspiration, the hope, the endurance, the motivation to strive for a better and right relationship with Christ. Because of your suffering here on earth, I will not suffer eternally. One day, I will see you again, I will hold you again, and I won’t hurt anymore. Thank you baby boy, for being all that you were to me. You have saved so many in your short 9 months than most do in a lifetime. I couldn’t begin to fathom the number of people you touched and will continue to touch through your story. I love you with all of my heart and I miss you terribly.

Love, Mom

In Oct. 2008, at about 17 weeks into my pregnancy I was devastated by the news that my precious baby girl would be born with a congenital heart defect known as Hypo Plastic Left Heart Syndrome.  My pregnancy with Arayah was filled with many tears and fears, would she be okay? would she survive?  Arayah was born March 26, 2009 at 12:46pm by c-section. She weighed 6lbs and 7oz and was a tiny 18.5 inches long.  Arayah was born motionless and not crying, I remember screaming “Is she breathing, what’s going on?”. At that moment I remember a sound so soft and weak, it sounded like a newborn kittens cry. It was beautiful and it was Arayah. She was okay and breathing. At that moment they wrapped her up and handed her to her Daddy to hold. He was so nervous, she was our tiniest baby of all. I got to kiss her face and then they whisked her off to the NICU.   Around 4 hours later I finally got to see our Miracle when Childrens Hospital brought her in to see me before they transported her to their hospital. The only thing I got to do was touch her in the incubator and blow kisses to her and then she was off. I remember sitting in my room crying like a child, praying and hoping to see her again and soon.  The next day my hospital gave me a day pass, meaning I had to report back by 6pm. My husband and I got up early and headed over to Children’s Hospital to see Arayah. Seeing her with all those lines broke my heart, I couldn’t hold her I could just touch her and cry. I went through every emotion “What had I done wrong this time around, what did I do to deserve this, and better yet what had she done she was a precious newborn. I now can understand that everything happens for a reason, even if I don’t like the reason.  The only thing that matters is she’s here and she’s a MIRACLE. On Arayah’s third day of life I got yet another day pass and went to see her. A precious nurse realized that I had never gotten to hold her yet and she then broke a ton of rules and allowed me to hold my baby girl for the first time. It was the greatest moment in my life. She was so warm and cuddly, so soft, and smelled so great. I will always remember this moment and 1 year later I do..  On day 6 I got to the hospital at about 5:30am the nurses got her out and allowed me to just sit and hold her, we were waiting to kiss our daughter goodbye for her first open heart surgery.  I remember her surgeon’s nurse coming in and talking with us about the surgery and how since Arayah was so small they thought they could make her left ventricle work, I was so excited..  About an hour later they came to take her down to the surgery dept. I remember that being the longest walk of my life. We got down to surgery and we got to spend about an hour with her while waiting for the surgery to begin.  Once they came in I kissed my precious baby and prayed to GOD to return her safely to me we were than escorted to the waiting room.  I remember sitting in the waiting room waiting for updates that seemed like it took an eternity. I remember sitting there and the lady running the waiting room calling our names and saying that the doctor was coming out to speak with us. That’s not right he’s not supposed to be done yet, something is wrong, these were the thoughts running through my head.  Next thing I know Dr. G was there wanting to speak with me in private, I broke down in tears.  He began by saying “Arayah is doing fine, I promise.” then I’m sorry right now her aorta is just to small and we have to do the stage 1 hybrid, I just can’t chance the repair right now..  Okay, that’s not the end of the world, I can live with that.. A few hours later we were escorted to the CICU to see our baby girl. When I first saw her I was so relieved and saddened at the same time. All the wires, tubes, and c-pap machine, so much for such a tiny baby. By this point Arayah was down to 5lbs 6oz, so tiny and so much stuff on her tiny little body. All together Arayah spent two weeks in the hospital before coming home for the first time. Bringing her home was the happiest and scariest times.  I was so excited that she was home yet so scared. Everything was okay until about the time Arayah was 2 and a half months old. Arayah began having trouble breathing while eating, she was hospitalized for about a week and they decided that she needed a heart cath.  We came back to the hospital not even two weeks later for her heart cath, other than Arayah deciding not to eat for two days everything went pretty smooth. We went home about a week later. At six months old Arayah developed RSV and was hospitalized for a few days for observation, she did great. On November 2, 2009 Arayah underwent her next open heart with the bypass.  Arayah’s surgery lasted 10hours the longest 10 hours of my entire life.  At last we got to go up to the CICU and see her it was horrible she was on a vent, she had 18 IV pumps running, chest tubes, cath, so much for someone so tiny. Arayah was 7months old and 10lbs 8oz.  The the unthinkable happened, all her alarms went  off, she was in heart block. They tried pacing her heart and shocking it back into rhythm.  We had horrible ups and downs, lots of oxygen, tubes, wires, pacing attempts, this one really just broke my heart.  My baby girl spent another two weeks in the hospital fighting for her life. Now we had high blood pressure to worry about, but two ventricles working. And now a new diagnosis, Hypo Plastic Left Heart Complex and Shones’ Complex.  What a trade off. Finally we got to go home, but something just wasn’t right, Arayah was having trouble breathing. Two months later my baby was in the hospital again she was just struggling too much when breathing, another surgery was scheduled. At 11 months old Arayah went in for her fourth surgery, this one on her airway and ears. On March 11, we went in for her surgery, man it was fast to about 30mins start to end, WOW..  The Dr. came out the tubes in her ears went fine and that she had a scar tissue band connecting her vocal cords that had to be removed, she would have come back in 6 weeks and have a broch scope to make sure it hadn’t grown back.  We spent four days in the hospital, mostly because she caught rota virus. Finally, home.  Now today is March 26, 2010 My baby is 1 today. This is one of the happiest days of my life, to celebrate the Miracle of life with one of the greatest Miracles of all, my Hero, My CHD Warrior, My daughter…

On March 12 2010 Kimmy turned one!! I didn’t know if we would be able to celebrate this day with her!! I know the feelings that I have felt when we found out that Kimmy hadCHDs is still there. I think I felt every emotion possible scared sick to my stomach joy proud sad every emotion showed through. I would cry alittle then I would cry an ocean. We were able to bring Kimmy home early November. Thank God!! I was so glad she would be home for her big sisters B Day and the holidays. We had just moved in October to a house!! We were sohappy but then the visits to Chicago started up again. UGH we go up there for a 0930 appointment endup home around700 Pm!! The drive the waiting the Echos the ultrasound the Vitals the catching up and trying to leave with out seeing somone else on the way out we want to share Kimmy with her “2nd family” but on our terms sometimes we are just to tired we want to get back home ASAP. Every appointment I relive all the emotions everytime I see a baby in a store in the hospital resturant where ever I yearn for Kimmy when she’s in Chicago!!  We bring her up to Rush and it’s the same thing We are asked by security whose the patient when they had the Swine Flu precautions out I had just told him we were going to the 7th floor to the Pediatric cardiac clinic!! Is Cardiac such a foreign word??? We go to pre op and we just want to get it over with andare pretty confident but then that Dark Cloud starts to lurk behind us. We follow the nurses up to a exam room for the temp weight etc. Everyone is admiring Kimmy she’s so cute she’s so small and then What’s she here for. Cardiac cath we answer she has multiple CHD’s there’s that feeling that sick to my stomach feeling the emptiness. The whispers as we are taking Kimmy to her little spot in Pre op.Oh look at the Little baby wonder what’s wrong with her ? That feeling starts to come back. It’s time to say that word again CHD but to make sure everyone knows what it is we say the hole meaning too.The Joy when we hear she looks so good and is so strong Yup she’s our little fighter and miracle!! We get to hear five hours later she’s doing good but her shunt was closed a bit!! So they ballooned it and we will be spending the night! The Dark Blob is tapping on my shoulder again but he didn’t get through this time She made it through with flying colors they were taking her off the vent right away she was very alert!! Yes the wait  was over!! Nothing like pushing an empty stroller around a hospital!! We had a little Baby Bear coverup buttoned in it was dads way of it not falling out or off I thought it was funny here we are pushing an empty stroller around till we put it in the van. The stares were interesting to say the least. We get up to Recovery and there’s Kimmy rollin around trying to pull everything out. Yup she’s fine back to her normal self.  Felt bad for the nurses though they would walk up to her and she would cry. We got upstairs and Becki one of her favorite nurses was going to get her set up in her bed!! She calmed down alittle. Two weeks went by we learned yes she will need the Glenn procedure and the repairs that they were putting off. We had Early Childhood services come in and we had requested a dietician even though we thought it would be good to have so close to home and that maybe we might learn something. From the start she kept telling us Dad wasn’t doing things right and we shouldn’t be giving her certain things it wasn’t age apropriate. Rush said give her anything and everything!! We have a long list of foods. She does require a lot of attention and she aquried Seperation anxiety in the Hospital we can’t leave her sight sometimes otherwise she starts crying and gets all sweaty and will keep crying. Sometimes we are so tired that we might leave toys on the floor we will pick them up the next morning. Kimmy has CHD’s but she can go outside it was 60 and dad had her in her coverup oh and heaven’s to betsy she was in the stroller and had a bottle of Chocolate pedia sure next to her. We are over joyed that she will pick up her bottle and drink from it and yes pedia sure leaves chocolate mustaches we know that but when you are trying to get things done in the house or outside is a chocolate mustache really that bad??  You want Mom to call you sorry Dad knows what he’s doing and so do I ?? Dad mixed her formula from day one and so have I we have put NG tubes in so many times it would make your head spin. Dad and I had to learn CPR and warning signs that Kimmy could be in distress. We know how to use a pulse ox!!  When we tell you Kimmy is labeled as failure to thrive and she won’t gain weight in the hospital either. We thought you were here to help! Instead you made more stress. I should of cancelled your services after the second time but i thought you would call the DRs and read the countless papers we have from the hospital. We thought since you are a RN LPN this would be familar wrong it wasn’t. I keep having the Dark Blob tapping me on my shoulder. I try to shake it away but he keeps creeping up. Iam pretty sure that everything will be ok on the 23 but I will still have the blob bringing that sick feeling back and the pain of turning you over to the nurse to take you to the OR! I will never get used to that Feeling a nd I will cry me an ocean when I see children in the waiting area etc! I will keep fighting to get people to understand our life with CHD. I will fight for you. I can’t call CHD a monster it has taught us alot of things lifes little lessons. WE will never take anything for granted and again and we will always be grateful to have you.  So I guess CHD is bad but also has a purpose in our lives. It’s amazing how many people think they are god and theirword is golden. I hope that each one we encounter that we end teaching them something like compassion understanding and that theree are cases of complex CHDs that cannot be solved on the first try and that you shouldnot judge a book by its cover!! This has become our life we can put off picking up toys we can put off other appointments  we can wait to go to the mall to do normal things but we can’t let Kimmy miss her appointments and if it takes awhile to feed her it usually doesn’t but if it does then we will take the time. If we have to do things with Kimmy on our hip we will because that makes it less stressful for her. We wouldn’t wish this on anyone it’s that we would like some understanding that we are doing everything for Kimmy and that we know what we are talikng about. Iam praying that CHD will be known as much as cancer and that it does affect babies!! If anyone knows where sleep is hiding could you send him my way??  We didn’t chose this life with CHD but we are adjusting and coping the way we know how!

In honor of Congenital Heart Defect Awareness Week, I am sharing a must see, seriously fantastic, short and easy to understand video I recently came across explaining heart anatomy and circulation!

It is beneficial for everyone that has heart, love’s their heart and/or love’s someone with a broken heart.  

The heart is amazing!

Did you know that your heart beats about 100,000 times per day, pumping 2,000 gallons of blood through 60,000 miles of a network of blood vessels in your body!!! It is incredible that such an organ exists and functions and mind boggling that each one of us living on the face of the earth has one!

I have been in the CHD world for going on two years now and it is the best explanation on the heart I have seen.  As new parents thrown into the world of CHD you try to understand all the lingo, the anatomy of the heart and how all the parts work together.  This video is great for that!  It helps to put all the pieces together in your mind.  And even if you are not dealing with CHD you have a heart so it still pertains to you.  Click on link below to see: 

Our son London II was born on July 28, 2000.  On July 30, 2000 he literally crashed & had to be stabilized and life flighted to UC Davis where he was hooked up to all kinds of wires & machines & IV meds.  That was the day we were told he had a CHD called Hypoplastic Left Heart Syndrome or HLHS.  We were given 3 options and his odds of living through them; Compassionate Care (take him home to die), a heart transplant (baby hearts are really hard to find) & if you can find one, the odds of him living through the surgery were 30%, and the last option was a series of at least 3 open heart surgeries with a 30% chance of making it through the first one.  We decided that we just had to give him a chance at life, even after his own cardiologist told us that if this were his child he would take him home to die.  We chose the 3 surgeries.  London had his 1st surgery at just 5 days old.  We spent the next 6 weeks in the NICU.  We were not allowed to hold him for almost 2 weeks after his surgery.  He finally went home where we stayed until his 2nd surgery at 7 months.  He spent 5 days in the hospital for that one.  After this surgery he had a few problems with collaterals (extra veins that grow from the heart to the lungs to try to compensate for low blood oxygen levels, these sound like they would be good, but they are bad for a heart child), so he had several heart caths and ended up having to have his 3rd surgery early.  So he had his 3rd open heart surgery at 2 years of age, 1 week after he turned 2 in fact.  And 1 week later, due to fluid & infection complications, he had his 4th open heart surgery.  Because of these complications we spent 6 weeks in the hospital and once again I was not allowed to hold my baby for 2 weeks after his surgery.  Thank god we have been fortunate enough to have not had any surgeries or hospitalizations in the last 7 1/2 years and he is now doing wonderful.  However, his heart is not “fixed”.  This is something he will have to deal with for the rest of his life, after all, he was born with only half a heart.  No one knows what the future holds for these children, the oldest HLHS’ers are in their early 30′s, babies born with HLHS did not survive before that.  So we don’t know how long he will live, we don’t know if he is going to outlive us, something that all parents look forward to and a lot of parents take for granted.  As parents we don’t want to think about ever having to bury your child, but as HLHS parents most of us deal with this thought on a daily basis as it is a very real possibility.  We certainly don’t want to think about it, but it can’t be helped, since we don’t have any idea what the future holds for these children.  This has been just a glimpse into my life of being a parent to a child with HLHS.  And even with knowing what I know now about this life, I would not trade him for the world, he is the most loving child any one could ever ask for.

CHD’s are real!  Before London was born, I had heard of CHD’s, but from my experience, they were not that bad, the people I knew who had them were older, like my dad, and he did not seem to have problems that I knew of at that time and did not until he was older.  My grandma had a CHD and her son (my uncle) was born with the same one, but my grandma lived to her 80′s and did not have any heart surgeries.  It wasn’t until London that I realized that most defects are very serious and many are fatal without surgery, I also did not realize just how many people were affected by them, since I had only heard of the few in my family, none of our many friends had any.  Now I know it is a very serious problem and we need more funding for research to be done on CHD’s and also we want to make everyone aware so that no parent feels alone in this world like London & I did when London was younger, we knew no one until he was a little older with HLHS.  That is why Shannon & I founded the Hope for HLHS group shortly after we met, the group was created in 2002.  Go to http://www.hopeforhlhs.com for more information on HLHS and a link to join our group if you are affected by HLHS.

1 IN 100 BABIES WILL BE BORN WITH A CHD THIS YEAR!

Congenital Heart Defects are the #1 birth defect.

This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects.

Also, just look around at my friends and you will see the special CHD Tags I have made for their children, you will see a lot of tags and this is just a handful of all the people who are affected by CHD in some way in their life.  Just to give you an idea of just how many people are affected by it.  My Facebook profile is http://www.facebook.com/ramobley.  Anyone affected by CHD’s or just wanting to help spread awareness or wanting to know more about them is welcome to add me as a friend, just make sure to add to the request why you want to be my friend.

My links:

London’s Website

Hope for HLHS

My Facebook Profile