This post is dedicated to a very dear friend of mine. We have never met in person before but we have been friends for about six years now. We met in a BabyCenter birth month group in 2013, only to have our sons be born on the same day and both be curly headed lefties. Her son still has his beautiful curls, but mine decided he hated getting his hair combed. We’ve bonded over many things over the years, but what I am about to educate you on concerning her son Brexton “Rex” will inform you about an unknowingly common condition, and make you love her as much as I do.
When you find out that you are expecting, so many emotions flood your mind. You’re happy, scared, you immediately start planning, you think about eating better, exercising more – even if that’s already your routine, and you are more aware of everything concerning your health and wellness. You can’t wait to hear your baby’s heartbeat for the first time, see their image on an ultrasound for the first time, you even anticipate holding them. However, my friend isn’t able to hold her child when she wants to, be with him constantly, and being that we are in the middle of a pandemic; restrictions are even tighter. Her son is in the PCICU, where he went as soon as she gave birth to him. You see little Brexton was born with a very complex list of CHDs or congenital heart defects/diseases. His parents were informed early on of his heart issues during a routine ultrasound and they were referred to a specialist, but the knowledge does not prepare you for when you have to meet the issue face to face. Knowing that immediately, or within days of giving birth that your newborn will have to undergo major heart surgery is a lot to take in. Then to be told that surgery may not be an option and he should be put on a transplant list is devastating. However, all is not lost – so keep reading about his condition(s) and what can be done.
What is CHD? CHD is a problem with the heart that a baby has at birth. The heart forms very early during gestation and is the first functional organ to develop. Before you are even aware you are pregnant, your baby’s heart has already formed, is beating, and pumping blood. CHD is the most common birth defect and affects 1/100 babies born in the US each year. That statistic gave me great pause because I have two children with perfectly healthy hearts, but either of them could have been that 1/100 – as well as yours. 1 in 100 is not a big exponential number, it is not like the chances of you winning the lottery or being struck by lightning. Out of that number, about 25% are born with a critical CHD. Brexton falls into that critical 25%. He was diagnosed with a complex CHD which include:
- Double outlet right ventricle – In DORV, the pulmonary artery and the aorta — the heart’s two major arteries — both connect to the right ventricle. In a normal heart, the pulmonary artery connects to the right ventricle and the aorta connects to the left. This creates a problem because the right ventricle carries oxygen – poor blood, which then gets circulated through the body.
- Double outlet left atrium – DOLA is a very rare condition. In a child with a DOLA defect, their left atrium drains into both ventricles and the only outlet for the right atrium is the atrial septal defect.
- Complete atrioventricular canal – CAVC is a severe congenital heart disease in which there is a large hole in the tissue or septum that separates the two sides of the heart…right and left. The whole is where the upper chambers (atria) and the lower chambers (ventricles) meet.
- Coarctation of the aorta – A narrowing of the large blood vessel (aorta) that leads from the heart.
- Tricuspid valve regurgitation – a disorder where the valve does not close tight enough. This causes blood to flow backwards into the upper right chamber when the lower right chamber contracts.
Of all the ways a heart defect can affect your baby, Brexton checks every box. It affects his heart chambers, his septum, his valves, and the arteries and veins. There are no definitive causes for CHD, only guesses. Whatever the reasoning for Baby Brexton’s condition, he has two parents that love him beyond this world and two brothers at home waiting to meet him. Brexton will need his parent’s to not only love and care for him, but to be his advocate. They will have to fight to make sure that the doctor’s are doing the best for him and they will need “Rex’s Hero’s” to be their advocates, cheering them on, assuring them they are being the best parents, they are loved and we care. Support is a critical component at this time and going forth. We need to stand behind them doing research to give them information, encouraging them with emotional support, and reassuring them every step of the way that you have what it takes to care for this beautiful boy you created, you carried, and brought into this world.
Brexton was able to have his surgery at exactly two weeks old. The doctors were able to repair his aorta and add a shunt. They also put in bands for his pulmonary arteries. They were unable to fix his leaky valve at this time, but he is being observed intently. He is stable and 3 days post op they were able to close his incision. He is technically on the transplant list, but through the good thoughts and prayers of all of you who share and read this, he will be perfectly fine. We are putting it out into the great beyond at this very moment. If you take the time to read this, leave a comment or just the hashtag #RexsHeros. We can’t take anything in life for granted, and this beautiful baby should be more than enough reason to realize that.
I have also attached a GoFundMe account to this post to help the family with expenses not covered by insurance. If you find it in your heart to make a donation, bless you.
After 17 months of ups and down, surgeries, endless doses of medication, and unwavering love and dedication from his mom, dad, brothers, and extended family Brexton passed away on January 17th at 17 months old. I haven’t posted a blog in a while, but this was one where I outlined the extent of Brexton’s condition. In the 17 months he resided her on this earth, he touched many lives and he was such a happy baby when his health would allow. I ask that you please follow @ Brextonfund on IG where his parents will be posting vital information about CHD, practices of certain hospitals, advocacy, and how to help your own child should you find yourself in a place where your child’s life is constantly in someone else’s hands.