As a parent to a child with CHD, it is hard to know how to begin this post even though I have acquired an extensive amount of knowledge and experience relating to CHD in the last 10 years. Truth be told, there is so much to be said and it is difficult to distinguish what needs to be said most. Looking at the image above, I believe it captures what needs to be talked about.
A little over ten years ago, I did not know the meaning of "CHD." I had heard of kids having heart conditions but I did not know the medical terminology of Congenital Heart Defect or Congenital Heart Disease. On the other hand, I was well aware of many other ailments that afflicted children. I had seen promotional pieces on television by St. Jude Hospital and knew a fair bit about various types of cancers. I watched the Jerry Lewis Labor Day Telethon for the Muscular Dystrophy Foundation many times and became familiar with different types of MD. I had friends with other conditions; Spina Bifida, Epilepsy, Addison's Disease and I myself had spent a fair amount of time in and out of the hospital with my own health concerns. But I had not been familiarized with "CHD" through promotional television shows or telethons or movies. I knew kids could have heart conditions but I had no earthly idea of how prevalent "CHD" is.
I know much, much more about CHD now. I would like to say the reason why would be I'd studied medicine in university or had developed an interest to read about it as a hobby instead of my real reason to know so much about CHD -- the real reason I am "CHD Aware" is because I am a Heart Mom. In November of 2004, I was blessed to give birth to a beautiful and precious little bundle of bliss. Like many expectant mothers, I spent months imagining the moment immediately following delivery when my baby would see in my arms and I would see her face for the first time and had that glorious moment of infatuation as I gazed at her tiny body.
Instead, at the moment of my daughter's delivery, I looked down to see a very small blue-grey listless body. There was no movement, no cying, no sounds at all - other than the frantic staff scurrying towards her. My daughter was not a plump, pink, loudly wailing beautiful baby ready to be placed in my arms for a bonding moment. In those moments, I did not know if my child were alive or not. The minutes that followed felt like hours. Hearing the call on the P.A. system "Neonatal Team to Room 8 Stat" repeat is a sound my mind cannot forget. My daughter was swaddled with just a small portion of her face visible and brought close to me by a Neonatal Intensive Care nurse so I could give her a kiss before she was taken to N.I.C.U. for a team of specialists to do all in their power to ensure my daughter survived.
Seeing my daughter after she was stabilized in N.I.C.U. for the first time was bitter-sweet. The good news was she was alive. The bad news was she was on life support with a breathing tube down her throat. Her tiny body was covered in electrodes connected to monitors and she had IV's in her head and hand and was in an isolation incubator preventing me from holding her. There seemed to machines everywhere. She was sick and as her mom, I wanted to wish it all away. I wanted a name for what was wrong with my baby. It was not any of the ailments I was familiar with. Having had two children previously and having attended many prenatal classes, read many books, spent time reading information on the Internet, etc., I don't recall ever finding information about the dangers of heart defects in babies. If the information was there, it did not register in my mind to think too much about it because I had no idea how common Congenital Heart Defects are.
It took several days for the specialists to diagnose each of my daughter's conditions but of all the days in her first few weeks in N.I.C.U. that haunt my mind the most is the day my daughter was taken for her first electrocardiogram and echocardigram. Having been raised in a home with my grandfather who'd developed heart disease in his late 50's and suffered a stroke during an open heart surgery, I knew a lot about adult heart disease. When the doctors began using terminology I recognized from my childhood experiences living with my grand-father, it became all too real and very frightening. Following the testing in the Heart Center, I was taken to a quiet room with several staff and heard news I never expected to hear. My baby's heart was "broken"; that is not the word the professionals used but in my mind, broken was what I heard and how I felt.
1 in 100!?! How can that be, I thought. Surely the serious and scary diseases were the ones I heard about frequently in prenatal classes and read about in the books - the risk of Down's Syndrome in older women who choose to have babies, Cystic Fibrosis Spina Bifida, Cleft Palate, Club Foot... And sure I knew heart defects happen too but never in my imagination did I think of statistics like:
CHDs affect nearly 1% of―or about 40,000―births per year in the United States.
They are the most common type of birth defects.
CHDs are a leading cause of birth defect-associated infant illness and death.
More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.
There are more than 40 different types of congenital heart defects.
Little is known about the cause of most of them. There is no known
prevention or cure for any of them.
About 75% of babies born with a critical CHD are expected to survive to
one year of age. About 69% of babies born with critical CHDs are
expected to survive to 18 years of age.
Each year over 1,000,000 babies are born worldwide with a congenital
heart defect. 100,000 of them will not live to see their first birthday
and thousands more die before they reach adulthood.
Some heart defects can potentially be detected in babies soon
after birth using Pulse Oximetry Screening, a fast, simple and painless test which determines
the amount of oxygen in the blood and pulse rate. Standardizing this testing in newborns before discharge from hospital can save lives of babies with some types of undetected Congenital Heart Defects.
My daughter's heart defects were not diagnosed correctly until she was ten days old. I had good prenatal care with an excellent OB/GYN at a leading top hospital in the region of the country I live in. I have several sonograms and my daughter's heart defects were not detected. If I had known then what I know now, I would have asked the questions shown in this diagram:
If you are pregnant, planning to have a baby or know someone who is, pass along this information.
Sometimes the diagnosis of (a) CHD(s) is/are not made until days, weeks, months, or even
years after. In some cases, CHD is not detected until adolescence or
adulthood. John Ritter, famous for his role as "Jack Tripper" on TV's "Three's Company" died at age 55 from undiagnosed CHD. Joe Strummner, front man for the band Clash, also passed from complications of undiagnosed CHD at age 50. Being aware of CHD, being educated and sharing this information saves lives of babies, toddlers, children, teens and adults.
I have been fortunate. My daughter survived the very difficult first months of her life and we were able to embark on a journey we did not plan or hope for but nonetheless, a journey with her as a part of it. She is now ten years old and while she has had corrective procedures, open heart surgery and other operations, my daughter has not been "cured". Her conditions are managed through diet, exercise, medication, countless clinic follow ups and tests and procedures and last but not least of all, faith in a future without further critical illness due to CHD keeps us hopeful that she will survive and thrive.
To learn more:
http://en.wikipedia.org/wiki/Congenital_heart_defect
http://www.heartandstroke.com/site/c.ikIQLcMWJtE/b.3484063/k.E84C/Heart_disease__Congenital_heart_disease.htm
http://www.webmd.com/heart-disease/congenital-heart-disease
