Friday, January 22, 2010

I am a heart mom

I am very proud and blessed to have three wonderful children, each with their own unique personalities and characters. I hold them dear to my heart; they mean the world to me. But I the day my youngest child was diagnosed with a congenital heart defect (CHD) life changed for me.

Although I was running a busy family practice, I knew of only one child in my practice that had a heart defect, and even that child did not eventually require surgery for his VSD. I had no friends, or family members who had children with CHD. This was something that happened to 'other people', not someone I would ever personally know. Boy, was I wrong! Now I am a heart parent, and I can rattle off a lot of statistics without even looking them up.

  1. Congenital heart disease is the number one type of birth defect
  2. Almost 1 in every 100 children is born with a congenital heart defect. That's about 35-40,000 births per year.
  3. Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined
  4. Congenital Heart Defects are the #1 cause of birth defect related deaths
  5. At least 35 types of CHDs have been identified to date
  6. Approximately 1,000,000 Americans are living with some form of congenital heart defect
Bilal has tetralogy of fallot. His diagnosis was missed prenatally. Sometimes these defects can be missed during routine ultrasounds. Since my pregnancy was not high risk I did not have a specialized ultrasound, or fetal echocardiogram. Everything progressed well, until about 36 weeks gestation, when we realized that he had intrauterine growth retardation. That means he was not gaining weight as he was supposed to. So I underwent weekly contraction stress tests for the next 2 weeks, which he passed with flying colors. I had an induction at 38.6 weeks, and he was born weighing only 5 and 1/2 pounds, but pink and screaming. The next day the neonatologist heard a heart murmur, and that murmur was still there the following morning. So a cardiology consult was requested. When Dr. Colvin walked in to my room and told me about Bilal's diagnosis the first feeling was that it had to be a mistake. Not my baby! But the reality gradually sunk in, as our lives began to change. In the beginning there was a lot of guilt, what did I do wrong? What should I have done differently during my pregnancy? But eventually I was able to convince myself that I was not responsible for my child's broken heart.

We saw the cardiologist every 2 weeks until Dr. C decided it was time to consult the surgeon for repair. By then he wasn't quite 2 months old, weighed less than 9 pounds and we were talking surgery already??!! Not at 4-6 month of age as we had been previously told. So I met with Dr. Knott-Craig, and instantly knew that he would be the right one, the one to entrust to repair my baby's heart. It was obvious that God had intended it; Dr. K-C, with his 20 year experience performing CHD repair had moved to Birmingham just a couple of months earlier. He came across as a very compassionate, soft spoken person and I took a liking to him immediately. So on September 18th, 2006, at 8 weeks of age Bilal had The Repair. My baby turned out to be a true fighter. His hospital course was miraculously short; we were home by Day 4. And we have been going strong ever since.

I admit there are many days that I don't think about Bilal's heart defect, in fact sometimes I don't even glance at his sternotomy scar when I am bathing him. It has become a part of him that I am used to seeing. But there are other days when I see his scar just peeking out of his pyjama top and my own heart skips a beat. I still wish it wasn't my child who was born with a broken heart; knowing that he is 'repaired', not 'cured', and his heart will never be 'normal'. Also knowing that he will most likely face another surgery later on in life, to replace a severely leaky pulmonary valve.

The type of defect Bilal has has the potential to be very severe, especially if associated with other heart/lung abnormalities. We are blessed that he is on the milder side of the spectrum. But tell that to a mom who has to hand over her child to a surgeon, understanding that the child's chest has to be opened, his heart artificially stopped, in order to create a new anatomy, ideally as close to 'normal' as possible. Any defect is far too severe. In a perfect world there would be no such thing as CHD; no child would have to undergo the pain and difficulty of heart surgery. But this is not a perfect world.

Feb 7th-14th is CHD awareness week. There are many people out there who do not understand the impact of congenital heart defects. Until three and a half years ago I was one of them. This week many local and national organizations will be involved in a campaign to educate the public about this issue. Let's all join hands in raising awareness. Our kids wear their scars with pride and heroism. We should show the world that we are proud of them too.


ShannonLeideker said...

What a beautiful post. Bilal is such a cutie! Madison also had her repair early (5 weeks). She is also on the mild end of TOF...I was told she will not need another surgery. And if she does, I hope it will be in the cath lab by then. It is so easy to forget about their special isn't untill someone sees her scar and asks me about it does reality sink in. Thanks for following my blog, I am looking forward to keeping up with your lille guy!


Michelle said...

We'll be keeping you and your family in our thoughts and prayers

Shannon said...

Bilal is adorable! I came across your blog through Luke's. I'm a heart mom too, but my son has a single ventricle. We're actually in the hospital right now as he's recovering from his second surgery. It's amazing how strong these kiddos are, and sometimes it is easy to forget that they're not "normal" until you see their scars.

I'm so glad Bilal has done so well. What a blessing!

Take care, and I'll be checking back in on that cutie!

Shannon Carter

Melissa said...

Great Post!! I felt like it was something I have written on my blog.. Nice to know I am not alone!!
I am so glad Bilal is doing so well!!

Hey did you get the email I sent you last week?


Tina:0) said...

Oh, how similar our courses are in the beginning stages of diagnosis. We, too, found out about Vaeh's defect the day after she was born. No red flags prenataly in our case either.
I didn't realize Bilal's anniversary was Sept. 18, 2006?! His anniversary for repair is our anniversary for diagnosis! Vaeh was born on Sept. 17th! Amazing how lives can coincide so closely!

shashank said...

Here is a link to more information about the genetics of Congenital Heart Defects that was prepared by our genetic counselor and which has links to some useful resources for those dealing with this condition: There is also a phone number listed if you need to speak to a genetic counselor by phone. I hope it helps. Thanks, AccessDNA

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