Noah
This is the story of Noah born with a congenital heart defect called Tetralogy of Fallot with Pulmonary Artresia, it is this Mother's prayer, that no child or parents of a child will ever have to travel this heartbreaking and sometimes devasting road of Congenital Heart Defects, without research, money for that research, and a voice, the future is much like the past… very uncertain, and unfortunately more and more babies will die from CHD's.
Our Journey:
Background Information: Mike and Beth Allman were united in marriage August 13, 1994, in Rock Hill, SC, after three years we moved to Myrtle Beach, SC.
Fast Forward 5 Years:
In July of 1999 I found out we were expecting. I had a routine ultrasound just to see how far along I was, the estimation was that I was 12 weeks along. They did find a fluid pocket in the thoracic cavity at that time and sent me to Charleston, SC to The Medical University of South Carolina. At MUSC they did another ultrasound and the fluid pocket that was there one week before was now gone. Another more devastating birth defect was found: a nuchal translucency (a pocket of fluid that ran from the bottom of his neck the entire length of his spine), I was now in my second trimester. They told me then that I was most likely going to miscarry and to go home within 48 hours I would lose the baby, however; God had other plans. We did meet with a genetic counselor at that time, because if by some slim chance I did not miscarry, then there was a great chance that the baby would be born with chromosomal abnormalities, they suggested early testing for chromosomal abnormalities, we opted to have an amniocentesis done at 20 weeks. They did suggest that we have another ultrasound done in between then and twenty weeks just to check for viability. When we went to the Myrtle Beach ob/gyn to have the ultrasound for viability done three weeks later, we heard a very healthy sounding heartbeat, and there was no evidence of the nuchal translucency! We had to show them pictures for the doctors to even believe that it was there! One more miracle that only God could have corrected!
When we went at 20 weeks to have the amniocentesis done the doctors told us that the baby might have a heart murmur, they instructed us to come back in 3 weeks to have an echo of the baby's heart in utero, we found out at this appointment that the baby definitely had a heart defect, and that he would require life saving surgery immediately after being born, and more surgeries later in life. We were given a diagnosis at that time of Truncus Arteriosis, but after he was born the diagnosis changed to Tetralogy of Fallot with Pulmonary Artresia.
When Noah was 4 days old he had his first surgery, they placed a BT shunt temporarily until he could grow and gain strength for the major repair surgery that he would later have to have.
At 6 months old Noah had his second surgery, using the Restalli Procedure they repaired the vsd in the bottom of his heart between the ventricles, (which made him bluish / gray ashen color), repaired another hole at the top of his heart with a patch, and put in an artificial conduit for a connection between the heart and lungs. After this life saving surgery he was pink for the first time in his life, he gained weight literally over night, and he thrived!
He is now a very healthy nine year old, he has played baseball, soccer and his favorite "real football", full contact w/ pads, helmet etc.
June 22nd , 2009 he had another surgery to replace the conduit, this surgery was a lot more difficult for him, in that he was older, and was very afraid of the unknown. Open heart surgery is scary for adults, I can not imagine what it was like for a nine year old little boy. He faced it with courage and is healing and recuperating well. It breaks my heart to think that he will have to endure this again in the future.
He is a very upbeat boy, never meets a stranger, he does not see color, race, age or social conditions when he meets someone, and everyone is a friend. He has made A/B honor roll this entire year at school, and I have yet to meet anyone that does not love him. In is very evident with his upcoming surgery, everyone wants to do something for him, as a mother, this is very overwhelming and yet humbling at the same time.
I could not even begin to tell you how many lives this child has touched, however; I can tell you that I am very proud and honored that God chose me to be his mother.
In closing please let me say that Congenital Heart Defects are the #1 Worldwide birth defects, of all other birth defects. More children die from CHD's than any other childhood disease or cancer put together. A lot of research is done for diabetes, childhood cancer, etc., but very little is done in the way of CHD's. The American Heart Foundation which is a wonderful organization, out of all the billions of dollars they receive each year, through walks etc., less than 1% goes to research of CHDs. Even if the money donated is earmarked CHD research…they will not use it for CHD research…why? All of their research and development goes to the prevention and research of heart attack and stroke.
Most insurance companies will not authorize a late term ultrasound to check for heart defects, if they would it would save thousands of dollars each year in that the parents could at least be aware and be able to have their babies at Hospitals that are prepared for them, instead of having to have the babies airlifted to these hospitals sometimes hundreds of mile away.
Being the Mother of a child with a Heart Defect has definitely changed my life, I am tremendously blessed, and I would love to see the day that there are no babies born with CHD's because of research and prevention.
Sincerely,
Beth Allman