CHD (Congenital Heart Defect) Awareness. Our family’s story…

CHD’s (Congenital Heart Defects) affect 1 out of every 100 babies born.

They have nothing to do with race, religion, health (for the most part, though it can be genetic), etc.

They are not selective and can happen to rich or poor people.

Newborns in many states are NOT screened for CHD’s as a part of regular Newborn Screening Tests before they are sent home.

There is a simple, quick, and painless test for newborns that parents can ask for that will rule out heart defects, lung issues, and many other issues that if not caught and treated can be deadly. It is called a Pulse Ox Test.

Women who give birth in hospitals have a Pulse Ox Meter attached to them the entire time they are in labor. It is that tiny red light that is attached to your finger and it measures the oxygen level in your blood. If your number drops, it means something is wrong.

This test in MANY states is NOT done on newborns. This is slowly changing state to state as parents and advocates work with Senators to introduce bills to make it a mandatory part of Newborn Screenings.

I am a CHD Parent. My son is a CHD Baby, a Heart Warrior, and here is our story.

Pulse Ox Collage

***This is my photo, please do not use it without giving me proper credit. Thank you. ***

I was a high risk pregnancy candidate. 7 years ago, I was diagnosed with a rare form of Endometrial cancer where my body produces non-cancerous cancer cells, but they multiply rapidly and I was told that though the cells were non-cancerous, that they would have to be checked every 6 months to make sure they stayed that way and that my best chances for children would be in the next 5 years.
When I married my husband, there was never a guarantee that we could have children, so we started trying immediately, and put our faith in God, and I got pregnant with my daughter. She was perfect!
When my daughter was 9 months old, I went for a check of my cancer cells and got some upsetting news. My pregnancy with my daughter had fed my cells and they had reproduced very rapidly, faster than expected and my tubes were about 75% blocked by the cells. My Dr’s told me that if we wanted more children, medically speaking, we had about 6 months to get pregnant before it was medically impossible.
As you can imagine, we freaked out a bit. Our daughter was only 9 months old, so we were thinking… can we do this? Is it too soon? Can we afford this? But then we realized that again there was no guarantee and in fact, there was a very high possibility that we wouldn’t even be able to conceive again. We again put it in God’s hands and said, “if it’s meant to happen, it will happen.”
Well, it happened, and within 5 months, I was pregnant again.
Because of my medical conditions, I was a high risk pregnancy again, so I was closely monitored. I saw a Fetal Maternal Specialist every 4 weeks and at my 18 week appt, we got the news… we were having a boy and he thought he saw an issue with our babies heart, a VSD. Our hearts stopped, but he told us not to panic and that he wanted us to see a Pediatric Cardiologist. At 24 weeks I saw the Pediatric Card, and the issue was confirmed.
At that time, he saw a VSD and a Coarctation of the Aorta (CoA). We were told that we would have to be monitored every 4 weeks for the duration of the pregnancy and that there was a strong possibility that our son would need heart surgery pretty early on. We were given our options, but all 3 of my Dr’s are Christians and never did they pressure me to abort. They just gave us the options and answered our many questions.
Of course we wanted to know if he had a chance, how serious the heart issues were, etc… They assured us that medicine had made HUGE advances in the past few years and that he would get the best care and that since they were not God they could not promise anything, but that they were fairly certain that he would be ok.
We saw 3 Dr’s throughout the pregnancy every 4 weeks and then as it got closer every 2 weeks.
I also has 3 times a week stress tests from 32 weeks on. Because of his heart and my high risk, I was scheduled to be induced at 38 weeks.
At my 37 week appt, my blood pressure was very elevated and I was already effaced and dilated a good bit, so the Dr’s decided to induce that day for his safety. A flight transport team was in the NICU OR Delivery Room. He ended up being too large for me to deliver naturally, and went into distress from the labor, so after 2-3 pushes, they decided to perform an emergency c-section. About 20 minutes later he was here and he was beautiful!
Miraculously, he was also stable, so I got to hold him for about a minute, then he was whisked to the NICU. He stayed in the NICU for 6 days and was on no medicine the entire time.
After 6 days, we were released and told to go on home, but to come back in 3 days to have his PDA (the blood vessel that pumps the blood from Mommy to the baby’s heart when babies are in utero) checked since this is what was allowing his heart to work. It normally closes after the baby is born, allowing their heart to take over.
That appointment sent our world into a tailspin. We were told that the PDA was almost entirely closed and that our son was in heart failure. This was on Friday, and if we were not in the hospital that night, by Monday he would be critical. We were given 2 options, we could go to the Cardiologist’s first choice, Boston Children’s Hospital or go to Ochsner Hospital in New Orleans. Well, we live in Louisiana and I was not able to travel really, so we went to Ochsner. It’s one of the top 50 Heart Hospital’s in the country.
We left the appt, went home, packed a bag, and got on the road, checked into the PICU and spent the next 30 days there.
On Saturday, we met with the Cardiologists on staff there and also one of the Surgeons. That’s when we were told that he had a few more issues than previously thought. They had discovered that he had a condition called Shone’s Complex. This is the rarest form of Hypoplastic Left Heart Syndrome. Instead of just having the VSD (about 26 of them actually) and CoA, he also had a very small left ventricle, an ASD, a small mitral valve, bicuspid aortic valve, and that his blood flowed in both directions in his heart. They were speaking Greek to us, but drew us pictures and took all the time we needed to understand what was going on and what needed to happen.
At 20 days old, our son had his first open heart surgery to repair the CoA (it narrowed in 3 spots) and received a pulmonary band. He developed a few issues after his surgery and for basically the first 6 weeks of his life, we lived in the ICU.
At 4 months old, he had his 2nd open heart surgery to remove the PA band and repair the damage to the Pulmonary Artery that the band caused. That hospital stay was a total of 5 days! We spent his first Thanksgiving in the hospital! But it was smooth sailing!
At 6 months old, he was hospitalized for 7 days with a collapsed lung.
At 11 months old he had his 3rd heart surgery. His many of his VSD’s were closed with a very large plug via a heart cath.
A week after that surgery, he was again hospitalized for a week and no one could figure out what exactly was wrong with him. He was breathing very rapidly and his blood pressure was very low, and his Tricuspid Valve was now leaking. But after 5 days, his Card. figured it out, the plug was the issue. It was so large and he’d had so many VSD’s that it did not close all of them and of the 2 that were left, one was directly on top of the plug and the blood was flowing through it and using the plug as a ramp, and shooting the blood directly into the Tricuspid Valve, causing the leak!
He is now 3.5 years old and a pure joy. He has no idea he is sick and we try to keep his life as on par with being a “typical 3.5 year old” as we can. He’s attending Playschool and is finally on the charts with height and weight.
Because he spent so much time in the hospital and was on Respirators so much as a baby, he did have some developmental delay with fine and gross motor skills. He saw a Physical and Occupational Therapist every week for a year and a half and now he has not only caught up, but has surpassed his expectations. He is very very advanced.
He will never be able to play any contact sports and he does have to be careful with things coming into contact with his chest and he cannot over exert his heart, but he’s so HEALTHY now.
We were recently given the go ahead to extend our Cardiology appts out to 1 year increments until such time as he needs another surgery and then we’ll deal with it as it comes.
He will need his Mitral Valve and possibly other valves replaced in the next few years. We are hoping to be able to wait until he is around 6-7 years old, because if we can wait that long, he can get adult sized valves and hopefully not need additional surgeries. However, this may not be realistic. But we have faith and will just take it a day at a time.
Since having his surgeries, he has developed Mitral, Aortic, and Sub-Aortic Stenosis, but he’s so healthy!
February is CHD Awareness Month and many people are unaware of the dangers of CHD’s.
There have been many deaths as of late in the news of young people and athletes dying unexpectedly because they had undiagnosed and untreated CHD’s. This is unacceptable.
If sharing our story educates more parents or people who want to become parents, and saves even one child’s life, we’ve made a difference.
CHD’s are scary, but they’re a part of our world. And even though our son has a serious condition, he thinks he’s normal and that’s all we can ask for!
Here is our little Heart Warrior!

Tris Collage

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