I knew this post would be difficult to write and share, but it is so important that people know that CHD affects such a large part of the population.
The ironic part of me being the mom of a CHD little guy is that for 15 years before B was born, I was heavily involved with the American Red Cross, specifically the heart programs. Throughout college, my sorority had our philanthropy for “Wear Red” and did hoops for heart events. We supported our sister, Maggie Sprague, who we lost last year to her heart issues. In 2008, I won a national award with two other colleagues for a fundraiser that we did at the school we worked at. We were recognized on the national level for our efforts and team cohesiveness SPECIFICALLY for funds for heart research. Oh, the ironies of that passion I had.
Both of my pregnancies were pretty run of the mill as far as complications go. Each kid had some chorioplexus cysts on their brain which sounds super scary, but its actually fairly common. We did have to go to MFM for a high resolution and in depth ultrasound for both kiddos. Everything checked out fine, and I delivered both kids at term.
S came into the world textbook. She was healthy as a horse and did wonderfully. B was a whole separate story. He came roaring in (accidentally) without a working epidural (this was not my plan). I screamed the F word more times than I would like to admit. Anyone who has had this happen probably know that the ‘ring of fire’ is a kind way of describing those moments. He made his way out with a broken clavicle, punctured lung, and what they thought to be sepsis. Though I was happy that I could walk around just a few minutes after he was born, I was heartbroken that he was taken away from me minutes after he was born because he was turning gray. His ‘just born’ pics on hubs phone were scary when we looked at them after we got out of the hospital. Gray babies are freaky looking.
We came to find out about the clavicle and lung a few hours after he was born when he had already been in the NICU getting poked and prodded. He also was diagnosed with ABO jaundice and required 24/7 bilirubin lights for 2 days which meant I couldn’t hold him at all. On his second day of life, I was an utter mess. I had spent all my time with him in the NICU, and I knew they were going to give me the boot out of my patient room. I had yet to take pain meds because I was just too busy. I barely ate, barely slept, was barely functioning. The charge nurse came in at the end of day two to tell me they were discharging me and I lost it. I melted down like I was insane and she was amazing. She offered me a courtesy stay at the hospital. (They also placed me at the end of the hallway closest to the door so I could leave easy and not be around any other moms who had their babies with them). Ironically, I have since met and become very good friends with two women who I was hidden from then!
On that second day, I went to his room after sleeping for a couple hours. (I was by myself because hubs was making the world go round for then 17 month old S.) There was a big machine being wheeled in and a doctor I didn’t recognize. They sat me down and told me that B needed to have an Echo of his heart because there were some abnormalities. I think I went into survival mode. I went through the motions as the NICU doctor drew me a diagram of the heart. They had Lurie’s Cardiovascular hospital online watching as the Echo was performed.
The next day, they confirmed that B had a couple things wrong with his sweet, tiny little heart. He had a significant murmur (which they let every training nurse and resident come listen to for training purposes). He also has two ASDs. The entire length of his Atrial wall was open, thus causing back flow to happen on each beat, hence the murmur.
B spent a few more days in the NICU with me sleeping on the cot eventually. We got discharged after weaning him off all of the O2, IVs, and monitors. He was sent home with a referral to his new cardiologist. The State of Illinois called two days after he came home to set up home visits, and the NICU helped us set up his cardiologist appointment. That NICU is likely the reason I didn’t actually get committed to a completely different part of the hospital that week.
B is going to be just fine. We are still monitoring his heart with his cardiologist, and for now, his doctor says the only thing he cant do is scuba dive and be an astronaut. 🙂 He will go back next year to come up with a more solid plan of what the future for his heart will be.
The point of this post is that this is SO common, and many times, like us, TOTALLY unexpected. We had no clue that he had heart problems before he was born, even with a level 2 ultrasound. Some people have CHDs and don’t even know about it until they are older. This sounds crazy, but we were lucky that his was significant enough at birth to be detected. We could have found out after it started making him sick or lord knows what.
I came home from that birth experience a completely different person that I was before I had B. I was a NICU mom, a CHD mom, and a mom of two. Lots of change but in a great way. I learned to be more humble and to be thankful. I learned to be brave and to ask questions. I learned that imperfections make for a perfect child. I learned that I am strong.
We don’t let B’s CHD define him in any way, shape, or form. In fact, its actually pretty rare and also hard for us to talk about because no one wants to think of their kid as a “defect”. Its scary. February is the month where we raise awareness and funds for CHD. We are so lucky that B has the best of the best doctors looking after his little ticker. Him and his buddy, H (also a CHD baby and his mama, H, is a dear friend/colleague/soul sister) can trade stories on the golf course about their cardiologists when they are in kindergarten together 🙂
We are 1 in 100.