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!

I really love it when people ask me, “Is Abby done with heart surgeries?”

To be honest, the answer to that question is we hope so…at least OPEN heart surgery. Dr. Kaza at Primary Children’s was able to put a valve that technically should last Abby through her full grown body. Of course, replacement valves wear out but, he is confident that by the time Abby needs another valve replacement, it will be done through a vein in her leg in the cath lab! So, while we feel so relieved that our little warrior has fought this battle with CHD so valiantly, Abby has an additional congenital defect we have to deal with–Congenital Scoliosis.

I have learned that in children with Congenital Heart Defects, especially Tetralogy of Fallot, 23% will have congenital scoliosis as well. In the general population 1 in 10,000 children will be affected by congenital scoliosis. This makes information less common to come by, additionally, most people confuse CONGENITAL scoliosis with FUNCTIONAL scoliosis. They are different and will require radically different treatment.

FUNCTIONAL SCOLIOSIS is a much more common scoliosis. This is the type of scoliosis they test for in Jr. High and High School by having children bend down and touch their toes while their spine is examined. Functional scoliosis is caused by a factor outside the spine, meaning that a muscle on one side of the spine develops more, pulling the spine slightly to the right or left. Or, one leg may grow slower than the other leg, causing an imbalance in the hips which pushes the spine to one side or the other. In this scoliosis they attempt to treat the cause of the curve. Most often it is treated with a back brace, shoe inserts, or chiropractic care. It is easily treated and rarely causes problems–keep in mind that the spine essentially FORMED straight in the womb.

CONGENITAL SCOLIOSIS is a different type of scoliosis. It is much less common. The word congenital means “at birth”–this type of scoliosis was present at birth and was caused by a birth defect in the spine. There are two different kinds of birth defects in the spine: A Hemivertebrae (or butterfly vertebrae), and a unilateral bar. The hemivertebrae is where one side of the vertebrae forms and the other does not. The unilateral bar is when a number of the vertebrae are fused together on one side so the spine grows lopsided, so to speak. Congenital scoliosis requires surgery to correct since bracing can in no way fix the deformed bones. In a small percentage of children, congenital scoliosis may be outgrown or the curve may remain stable. In 70% of cases, the curve progresses as the child grows and will require surgery to ensure that the child can walk uprightly and has no problems with other organs in the chest cavity.

Abby has both Hemivertebrae and unilateral bar defects in her spine. The picture above looks very similar to Abby’s X-ray of her spine. She has a curve of 53% (which is considered severe) in her mid-back where she has unilateral bar and a smaller curve in the upper back area where she has Hemivertebrae. We are now looking at surgery to correct this defect around 12-years-old or so. One-and-a-half years time.

This surgery always felt far away…and for some time it sounded like it might be possible for her orthopedic surgeon to remove some growth plates on one side to correct the curve; however, at our last visit it became clear that her curve is progressing faster than he likes and is already a severe curve. Her surgery will require fusing of the vertebrae affected with bone grafts and metal rods and screws. The ICU stay is 2-4 days and the total hospital stay is 5-7 days. Children are then required to wear a brace for 6-9 months to protect the spine while it heals. Additionally, some patients require rehab therapy for 1-2 weeks after the surgery to help with walking, moving, and loosening the spine. This rehab is usually done with the child sleeping at the rehab center, although sometimes children are allowed to go home and attend therapy close to home.

Having said all that….so clinical and matter-of-factly….I want to cry when I think about this sweet girl going through ANOTHER surgery. It is true this surgery is not as “serious” as open heart surgery, although children with CHD do run a higher risk of contracting staph infection which can cause serious problems to the already repaired heart. Whether it is serious or not…it inflicts pain on her. It involves a hospital stay, which is scary to her. It requires ICU stays, arterial lines, catheters, intubation, and invasive procedures on her body. It scares her. It BREAKS MY HEART.

I would love to ask WHY? But that really doesn’t matter and I won’t get the answer answered. So, we take a deep breath. I have shed a few tears over the thought of more. I have realized that it could be worse and she could have had much more to go through like so many other heart children do. And, I remember that she is a huge ball of fire in a little body and she has a soul full of fight. She can do it and so can I. So here’s looking ahead to yet one more mountain Abby must climb…and that I will follow her to the top and over the other side.

I have a beautiful friend who lost her precious daughter at five-days-old to an undiagnosed congenital heart defect.  You can read about Kristine and her amazing daughter, Cora, by visiting their blog.  Today, the 30th of every month, marks the anniversary of Cora’s birth.  She would have been 7-months-old today.  Kristine talked about her ten wishes  on Cora’s blog and asked “What do you wish?”  So, I’m answering her question…as best I can…in honor of Cora on Wear Pink For Cora Day.

1.  I wish that Cora was still with her mom and dad…and that Pierce, Aiden, Gracie, Stephen, Elaine, Hope, and thousands and thousands of other CHD children were with their mom and dad also.  I wish that these angel’s broken hearts were diagnosed or treated.

2.  I wish that more mothers and fathers knew what Congenital Heart Defects are.  I wish they knew that 1 in every 100 babies would be born with a heart defect.  I wish they knew that this defect is the birth defect MOST likely to affect their precious babies.

3.  I wish that no parent ever had to experience this.  The stress, the fear, the anxiety, the pain of watching helpless….I wish I could put into words what this feel likes when it is YOUR child.

4.  I wish the CHD community could come together and rally for this cause.  I dabble here and there in CHD awareness.  I would love to do more; however, I wish that pride and anger or self-serving indulgence did not corrupt our efforts.  The squabbles and bickering scare me away enough that I am not as involved as I would like…I want to be involved enough to help change the world, not fight over board policies, presidents of organizations, and which organization has the “rights” to do what they are doing.  I wish it was easier to be involved.

5.  I wish my daughter’s voice was heard more.  Her fight with this monster has changed my life.  It has changed her grandparent’s life.  It has changed her aunts and uncles’ lives.  It has changed ALL who really know her.  Her voice about this disease is amazing!!  You can hear her voice here or here.  I wish that the world could know how this journey has affected HER and millions of others like her who are living with CHD.

6.  I wish more funding for research was available for congenital heart defects and methods to treat it.  I wish this picture wasn’t gruesome to most people because THIS is what will keep children from dying, allow minimally invasive surgeries, and clues as to the causes and ways to stop CHD.  I wish more money for research was available.  (This is a pigs heart, that is beating independently from the body thanks to researchers.  These kinds of studies are imperative for finding new treatments and cures and improving on the ones in existence.)

7.  I wish that others wouldn’t downplay CHD.  I wish that the medical community wouldn’t downplay it by dismissing calls for universal pulse-ox testing.  I wish others would NEVER ask me if a certain surgery or procedure will “fix Abby’s heart.”  Her heart will never be “fixed.”  Her defect has actually altered the physiology of her heart…never to be whole or repaired.  Thanks to research from years and years ago….it can be treated…but never fixed.  I wish the media wouldn’t downplay CHD by glossing over us.

8.  I wish that I could thank the surgeons who have saved my daughter’s life.  I wish I could express the feelings I feel when I learn about the pioneering surgeons and doctor’s who first operated on Tetralogy of Fallot.  I wish I could somehow express my sincere gratitude for those who have offered love, support, phone calls, meals, babysitting, cards, gifts, encouragement, and care for Abby and our family over the years.  I wish words like thank-you, appreciation, and gratitude could express the way I really felt in my heart for ALL of you who have reached out in our times of need.

9.  I wish that every cough, fever, dental visit, headache, dizzy spell, fainting spell, sore throat, and light sensitivity didn’t cause a world of anxiety in our life.  I wish others UNDERSTOOD how devastating exposing my daughter to certain illnesses can be.

10.  I wish that the future for this little girl gets brighter.  I wish for her all the happiness she deserves.  She is my hero…and has taught me more about grace, courage, faith, love, and light than anyone.  I wish for her broken heart to be happy.

I asked Abby to write a little about what she experienced to share with our readers.  I can sit here and tell everyone about my experience again and again….but only the true hero, who lived the experience firsthand, can really share what it was like.  In her own words, this is her story:

I guess I should start from the beginning so here it goes.

I woke up that morning ready to face what I had to do.  When we got to the hospital they took me in for a check-up.  They made me put on clown socks and old man jammies.  Then we went to the waiting room.  The child life specialist Rachelle waited in the waiting room with me.  I found Mario Party 8 on the Wii and started to play.  Soon a nurse came out and told us that Annie, the baby girl before me, was taking longer than expected.  A few hours later Dr. Kaza came out and said that he would be my surgeon.  That kind of surprised me because we thought that Dr. Burch would be my surgeon.  But I liked him a lot.  He explained the surgery and said that next time I needed a valve they probably wouldn’t have to open the chest.  I asked if they would put it up my leg.  He looked at me astonished and answered yes.  About 45 minutes later they came out and said they were ready for me.  I took squeezer, my bear,  and walked down the hall.  I wasn’t really scared… I just wanted it done.  When we got to the point where I had to say goodbye I said goodbye and went to the operating room.  The operating room was pretty cool.  The lights over the table looked like giant lasers.  When they put the mask on me and started the air I instantly felt that weightless sensation.  I talked until it went black.

I remember waking up puking.  Apparently I puked three times but I only woke up once when I was puking only to fall back asleep right after.  I also was apparently yelling “Mommy I can’t breathe” when I was on high flow oxygen but I don’t remember that either.  The first time I really woke up my mom wasn’t there, just a nurse.  My dad and the nurse had persuaded her to get some sleep.  I was struck numb. All throughout the night I kept waking up every hour asking the nurse to call my mom.  I finally got her to call her.

The next day I wasn’t very happy, just blah.  I didn’t want to do anything but the nurses had other ideas.  So I got up and sat down in a chair.  I didn’t like it.  They also made me use the bathroom.  I didn’t like that either.  I also had a problem–my back had HUGE knots in them and it made my back sore.  My grandma stayed with me that night.

THE FOLLOWING PARAGRAPH IS NOT FIT FOR THOSE WHO HAVE ISSUSES WITH BLOOD!

On the third day I was ready to move into my own room.  I just had to have the drainage tubes to pull out.  When they came I wasn’t too worried it hadn’t hurt when they pulled out other tubes.  The one in my side didn’t hurt to pull out but the middle one did.  They told me to breathe out when she pulled on the tube–I did as instructed.  It was a long tube so I didn’t have any more air to breathe out.  I cried out in pain when it broke free from my body.  Blood splattered everywhere.  I then was moved into my room.

I had a lot of visitors the next few days and was slowly getting better.  Finally it was time to go home.  I was happy to leave but I left a different person.   I left with a memory that changed my life.

That is my story of my 2^nd heart surgery through my eyes.

MOM’S NOTE:

Abby truly did leave the hospital a different person.  She has slowly gained back her spunk and sunshiney personality.  She laughs more often and we see her beautiful Abby smile…..but something has definitely changed.  She is more thoughtful.  She spends more time thinking and contemplating.  She seems less carefree and a little more serious, as if the weight of the world is sometimes sitting on her shoulders.  She looks at the world and those around her differently–noticing that the world is full of not only carefree happy experiences….but also those that test and try her, making her stronger.  Making her reach beyond the darkness she never noticed was there before.

I’ve walked down the hospital hall and handed my child over into the hands of capable physicians and God twice now for open heart surgery. I’ve watched as she was taken beyond the yellow and black line that separated her from us and felt the awful pit in my stomach and waited with the knowledge that I can’t do anything for her. Turning your child over to a physician for any medical procedure is hard; turning your child over for a life-threatening surgery is something I don’t think I can put into words.

Can you prepare for that? No. Nothing you do can prepare you for the emotional toll, the hours of waiting in an operating room, the nerve-wracking havoc tugging at your heart and mind…nothing can prepare you for that.

While emotional preparation may not be possible, education is. Knowledge is power in the world of Congenital Heart Defects. The more knowledge you have, the less helpless you feel. It is usually fairly easy to gain knowledge on the “basics” of your child’s CHD and the surgical procedure they will go through. What isn’t always easy is to get the knowledge you need that will prepare you the best. Knowledge that can help you and knowledge that can help your child can make open heart surgery and recovery a little less stressful.

This would be my list of preparation advice for those facing open heart surgery with a child.

* Learn all you can about the hospital, surgical procedure, surgeon, and preferred treatment of cardiac patients. Hospitals are all different. You may know someone who has been through this before and feel ready; however, it may surprise you how different your experience turns out. It is important for you to understand how your hospital works. Some hospitals are more likely to use newer methods of treatment, surgery, or respiratory therapy. Anesthesia care and techniques differ widely. Does your hospital have a PICU, ICU, or CICU? Where do you wait during surgery? How long until you will be allowed to see your child after surgery? This list is just a tiny fraction of all the things that differ from hospital to hospital. You should find out so you aren’t surprised by any of these things. Do your research on hospitals and their surgery protocol just as you would your child’s condition.

* Be aware of how your child will look after surgery. With my daughter’s first open heart surgery, we had friends who showed us photos of their daughter immediately following surgery. We stared at the photos as they explained all the tubes, cords, IV’s, medicines… and more. Although our daughter didn’t look exactly the same, we were better prepared for what we saw when we walked in the room. We recognized her knees down to her toes and her beautiful eyes and top of her head, otherwise, she was completely covered in tubes, wires, bandages, and tape. For us, it was still hard to see but not nearly as hard as those who came to visit her who had no idea she would look like she did. Google search open heart surgery images for pictures to prepare you. Study the pictures. If you know someone that has been through it, you can ask them to explain what all the lines and tubes and equipment are for. It won’t make it easier to see, but it will definitely take the horror out of it. Abby’s pictures can be seen on the Miracles and Milestones page of this blog.

* Learn ways of calming and soothing your child. This can be invaluable to you and your child. Knowing you can calm them down and that they are as comforted as possible will make you feel useful and comforted. Talk to your child, even when they seem asleep or incoherent. Your voice will soothe them. Touch them often, again, even if they are sleeping or sedated. Run your hands through their hair, rub their hands and feet, and anywhere else that is free to touch. Study up on Pressure Point massage. Using a reflexology foot chart will help you understand how to rub to help ease pain in certain areas of the body. Abby loved foot rubs and hand rubs as a baby and adolescent while recovering. We found a lotion that smelled good and rubbed away. Music therapy or playing music can also soothe and comfort some children. We played classical music when Abby was a baby at home and she responded favorably to it during her recovery. Anything that calms your child should be used in the hospital to help them through their traumatic experience.

* Know what to expect during recovery. Every recovery is different and every child is different but, knowing what might happen or what happens to many may help. Recovery for a baby is amazingly different than recovery for a child, teen, or adult. Find out what to expect. Many babies are kept sedated for longer periods of time and on the ventilator longer. Additionally, their hearts don’t have much room to swell so their chests may be kept “open” for a time. My daughter was so sedated for the first five days after surgery that I became fearful that she had suffered severe brain damage. When she would open her eyes she would not respond to me at all. The faraway stares and non-responsive is very normal when coming of sedation. Problems may also come up with feeding issues, either refusing to eat or not being able to nurse because of the drainage tubes. Deciding before hand how to handle the feeding issues, especially if nursing, is important. Do you want them to give them bottles to try? The sooner they eat the sooner they go home; however, this meant giving up nursing for me before I was really ready. I hadn’t thought through that I did not want her to try formula or juice by mouth…I wish I would have stuck with breast milk through an NG tube and continued to try nursing until she would nurse again. Many children also suffer sleep issues. They may not want to sleep or may have hard times sleeping. Their sleep cycles will be interrupted. Finding things to help them sleep, a favorite toy or blanket, can be a lifesaver.

* Prepare for the emotional toll of open heart surgery on older children. As a baby, our daughter was kept sedated and comfortable. I remember some hard days but mostly she seemed comfortable, as long as she was being held. Abby’s most recent surgery was a different experience. She was in quite a bit of pain, and was asking for pain meds every hour. Having lines removed and drainage tubes pulled was painful. The nurses tried to keep her med intake down but then she was in too much pain. Her incision and sternum were also very painful. This pain made her depressed. In addition, her little body got very sore from sleeping in the same positions on the hospital bed. She didn’t smile and our spunky, full of life little girl was the lowest I’ve ever seen her. I had read about depression after surgery and was ready for it, so I knew to allow her to feel how she did. I validated and agreed with her that the surgery and having to have it was awful. Others were shocked and concerned with her depression though. They didn’t realize the surgery would take such an emotional toll on her. Abby has been home for a couple days and is still dealing with the blues that follow surgery but, is slowly getting back to herself. What I wasn’t prepared for was the anxiety attacks! The anxiety in the hospital was severe. Abby suffered full blown adult type attacks that raised her heart rate and breathing rates and made her feel like she couldn’t breathe. Your child may suffer anxiety attacks as a natural reaction of being in the hospital and enduring such a serious surgery. Other emotions may also be felt. Anger, sadness, apathy, phobias, or feelings of being overwhelmed. Abby suffered all these. She would make comments like “You made me have this surgery.” She would also get overwhelmed with too many people around her. All these emotional ups and downs are normal and don’t have to surprise you. If you have a plan and know how to deal with them you and your child can make it through surgery and recovery.

This list may need adding to. I may have left things off that others experience. This list can help you prepare, in a small way, for the mountain ahead of you. While nothing can fully prepare you, you can be prepared for some of it, and help your child through it.

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