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.

Last night I had snuck in to say Good Night to Gabriella, my three year old “heart child”, after my husband had put her to bed.  Filled with horrible mommy-guilt because these 2 minutes would be the only time I would spend with her that day, I promised her that we would do something special the next night.  Maybe the park, maybe a walk, maybe….even ice cream.  Well, Gabriella awoke the next morning and came bounding into my bathroom asking “What should I wear to eat ice cream?”  It took me a minute to get what she was referring to, but I then thought “Of course she remembers.”  When it comes to promises she’s like an elephant.  She’s never once forgot a promise of ice cream.
 
As I drove to work that morning, marveling at my daughter’s outstanding memory and begruding her endless energy at 6 am, I began to think of one those favorite “comforting words” people like to say to you when you have a sick baby or toddler– “At least she won’t remember any of it.” 
 
Please people, add this to the list of Things-To-Never-Say-To-The-Parent-Of-A-Sick-Child.  For some reason, our society has come up a list of things that they like to say to parents of a sick child. Things they think are comforting, yet often they end up being the opposite.  When you say those words to me, these are the things that come screaming into my head…..
 
#1- Even if she doesn’t remember, I do.  The image of her body laying lifeless- hanging closer to death than life- is burned in my mind.  Hearing her cries and screams and pleas for pain to end still haunt me in my sleep.  Even if she never remembers one stitch of pain, I will remember all too well for the both of us.
 
#2- Even if she never remembers the actual surgery, she will never be able to forget that she is different.  She wears the scar of a warrior.  I see her scars as a sign of pride.  But to a heart kid, the scar is often a source of seperation at best, and of shame at worst.  A reason to not go swimming at summer camp.  A reason to never want to wear low cut shirts (something I think her dad is secretly happy about).   We have been told she likely will experience ongoing pain in her scar area even as an adult.  A constant reminder, stiched on her body.  She can never forget.
 
#3- Even without conscious memory, her body will never forget.  Her body remembers.  There are amazing stories of people receiving heart transplants having memories, cravings, and thoughts that came from the donor.  Much research has begun that shows that memory is stored in the body on a cellular level.  After having been discharged at 4 months old, when we went back 1 year later to the same hospital for a minor procedure, Gabriella had horrible reactions to stimuli that she had not been exposed to since she was 4 months old.  She was happy and cheerful in the pre-op center…until they wheeled in a crib like she spent weeks in while in the hospital after surgery.  She screamed bloody murder at the first sight of the crib.  At alcohol wipes being opened.  At people putting the masks on.  Don’t be fooled….children remember.  Today, she no longer screams at those things, except needles.  She knows what hurts, what doesn’t.  She knows what to do with a stehoscope.  She and her sister love their medical kits filled with REAL medical equipement…Gabriella even puts the intubations tubes in her mouth.  But they don’t play “doctor”.  They play “heart surgery”.  They crack chests, they put oxygen masks on the face, they insert IVs.  And it breaks my heart that my children joyfully go around playing “heart surgery”. And their joyful because it’s their world, their normal.  Commonplace.  And you never forget commonplace.  You never forget normal.

Abby was diagnosed with Tetralogy of Fallot at three-days-old. I never experienced the infamous 3 options presented to mothers who are diagnosed in-utero. I don’t know what that would feel like or what kind of emotions would run through your mind, both upon hearing the diagnosis and during the remaining months of pregnancy. I had a breathing little baby in my arms that I had fallen head over heels for. Her silky black curls, her beautiful blue eyes, the smell of her sweet breath, her soft skin…I knew that I would fight to keep her alive. I would go to whatever lengths I had to and beyond to keep her here.

This post has nothing to do with my stand on abortion or whether I think it is right or wrong. It has to do with a medical professional giving incomplete information to parents who were diagnosed in utero with Tetralogy of Fallot and trisomy 21. It has to do with that father spreading the word, to who knows what ends of the Earth, that Tetralogy of Fallot and trisomy 21 are conditions that are incompatible with life.

I came across a pro-choice blog in my searches. The blog had a post by a father. They were expecting twins. A healthy son and a son with birth defects. The “sick” son or the child this father refers to as “angel baby” was diagnosed with Tetralogy of Fallot. After receiving the diagnosis, the father stated that the doctor told them “the baby’s condition was inconsistent with life outside the womb.”

Here my heart skipped a beat. I caught my breath. My stomach flipped. I immediately thought of my beautiful ten-year-old daughter who lives everyday to the fullest. She loves Taylor Swift and Lady Gaga’s music. She watches ICarly. She loves to curl up on her bed with a book and she READS and READS like no child I’ve ever met. She is hardly inconsistent with LIFE!

These parents later were told that their son also had trisomy 21. A condition that is nearly identical to Down’s Syndrome and often present with Tetralogy of Fallot. They were told by a neurologist that he had definitely had a stroke in utero. They were also told he had a webbed neck, clubbed feet, tumors and cysts, a small brain, a deformed face, and a deformed nose high on his face.

Granted, this baby sounds like he had severe defects…as far as they could tell by the 26th week of gestation. They were told that if “Angel Baby were to survive birth, and the first 30 seconds of life, he might never attain any degree of consciousness or have any meaningful life or interaction with any one or anything.” The doctor went on to tell them that “to call Angel Baby “retarded” would be a great compliment.”

The parents decided to inject their angel baby with a shot of potassium to the heart, killing him. At 35 weeks both babies were delivered C-section. A healthy son and the deceased fetus, whose “profound malformations of his heart and nervous system” were “inconsistent with life outside the womb.”

I don’t profess that these parents should have attempted to have and raise their angel baby. I don’t profess that the choices they made were wrong. They made choices based on their medical advice and the choices they felt best served their son’s twin and the mother’s life. They did what doctor’s encouraged.

What I do profess is that the article is presented in a way that makes it seem like Tetralogy of Fallot is an untreatable heart ailment. And I profess that the article makes it seem like having trisomy 21 and Tetralogy of Fallot is something so terrible that death is preferable to these abhorrent conditions, when in fact I hope beyond hope that it was other serious defects that made the medical doctors encourage abortion. What I profess is that the article is close to negligent and leads others who find it to believe that children like my daughter and others who have trisomy 21 to deal with as well, should be aborted because their lives are not compatible to living. I profess that the doctor’s who handled this case were also negligent if they led the couple to believe that it was because of the heart condition that made the life of this baby not worth giving a chance.

I am so happy I found out about my daughter’s beautiful heart…after. The emotions were hard to deal with. The grief was overwhelming for days. The fear and anxiety compounded the normal emotional task of birthing and caring for a newborn. But, no doctor ever told me my baby’s life would not be worth keeping. No one ever encouraged me to abort the life of this baby…who also had other congenital issues that could have led them to believe she was severely handicapped as well. No one ever made me think that my daughter’s life wasn’t worth every last ounce of fight we had to keep her here. I hope that all those of you who find this know that Tetralogy of Fallot is most definitely compatible with life. I hope you know that trisomy 21 children are amazingly beautiful children. I hope you know that those of us with children with perfect broken hearts wouldn’t trade them for the world!!! They are worth every second or minute or day or week or month or year that we get to spend with them in our arms…loving them and feeling of their amazing and tremendous spirits.

They are most certainly compatible with LIFE!

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….

For years GE has been working on something that will revolutionize medicine as we know it today. From unidentified heart defects, missed tumors, blocked intestines – you name it – Vscan will find it. The General Electric Vscan is now being sold for $7,600 per unit as opposed to $100,000 – $115,000 for a ultrasound machine capable of the same technology. It was a dream for the CHD community to make sure every child is scanned – and while Pulse Oximetry is a MUCH needed beginning we can move that even further by identifying what type of heart defect a child or adult has at a VERY low cost to the patient and insurance. Check out the following video and the links below to learn more.

Aiden’s Angels, an organization founded by myself and my wife Tracy are going to be purchasing these devices worldwide to give as many children a chance at a beautiful life as we can.

Visit the GE Vscan Website to learn more or purchase one for your practice. Visit GE’s HealthyImagination Vscan Website by clicking here.

For years I was an avid blood donor; I would donate as often as I could. Occasionally I would be declined as a donor because I was anemic or underweight (hah, those were the days!), and at other times I would be declined because I had been vacationing in a Malaria endemic area (Pakistan). But still, I donated frequently. Then the guidelines changed, and now I am no longer able to donate blood in the United States. Ever. Why am I not eligible? Because I resided in the UK for greater than 3 months between January 1, 1980, and December 31, 1996. Apparently I could put my blood recipients at risk for developing variant Creutzfeld-Jacob Disease (vCJD), a.k.a. Mad Cow Disease. Ugh! It’s disappointing; especially when you hear about the shortage of donors. I was not aware that I could have donated before Bilal had his surgery, because apparently eligibility criteria for family members are less rigorous. He received blood on two occasions after his open heart surgery.

Until recently I had never thought that I would choose to be an organ donor. But since I have become more involved with the Congenital Heart community I have seen so much good come from organ donation and transplant that I had to stop and think. Being Muslim there are certain things we believe in regarding the sanctity of the human body, even in death, which has often made me wonder if this is acceptable, or it would cause conflict with my faith. We believe that the Quran guides us, and we can find answers to all such dilemmas within. I am not even remotely a scholar of the Quran though I try and read it with translation when I can. The issue of human organ donation and transplantation is a modern one; obviously in the time of the Prophet Muhammad (PBUH) when the Quran was revealed to us such procedures were not being performed. In such instances consensus opinions are expressed by scholars of the Book to interpret the Word in a modern context. These opinions are called ‘Fatwas’.

So I started to do some research online, and came across several interesting sites that presented opinions in the light of teachings from the Quran. For example this site presents both pros and cons in the light of Quranic teachings. And you can find a Fatwa from an Islamic scholar here. The salient points of this latter one state:

Conditions associated with a living donor:

1. He/she must be a person who is in full possession of his/her faculties so that he/she is able to make a sound decision by himself/herself;

2. He/she must be an adult and, preferably, at least twenty-one years old;

3. It should be done on his/her own free will without any external pressure exerted on him/ her;

4. The organ he/she is donating must not be a vital organ on which his/her survival or sound health is dependent upon;

5. No transplantation of sexual organs is allowed.

Conditions associated with deceased donors:

1. It must be done after having ascertained the free consent of the donor prior to his /her death. It can be through a will to that effect, or signing the donor card, etc.

2. In a case where organ donation consent was not given prior to a donor’s death, the consent may be granted by the deceased’s closest relatives who are in a position to make such decisions on his/her behalf.

3. It must be an organ or tissue that is medically determined to be able to save the life or maintain the quality of life of another human being.

4. The organ must be removed only from the deceased person after the death has been ascertained through reliable medical procedures.

I also found several other similar references, that essentially permit organ donation and consider it not a violation of the human body, but an act to save another human’s life. And “whosoever saves the life of one person it would be as if he saved the life of all mankind” (Al-Ma’idah 5:32)”.

So I have set my mind at ease and made my decision. I choose to be an organ donor. Most importantly my family is aware of my decision. And next time I renew my driver’s license I will answer “yes” to the question, “do you wish to be an organ donor?” My decision is a very personal one, and I would not fault anyone for choosing to be or not to be a donor.

Do you want to share how you feel about organ donation?

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