Tyler Thayer   |   April 29, 2016

“He didn’t look like he had a defect, he looked perfect to me”

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Not all Congenital Heart Defects are detected before birth. Depending on the severity, some defects may go undetected for days, months, or years after birth. No matter how old a child is when they are diagnosed it is always scary news to hear. Thank you Alex and Dave for sharing the story of your son, Conner, with us!

Conner_1webAt Conner’s two week check-up and his pediatrician noticed he had a functioning heart murmur with irregular breathing. She assured me that it was common and that it normally wasn’t anything to worry about. My husband’s cousin was born with a heart defect and needed a pacemaker, so Conner having a slight murmur put my mother in law on edge and she insisted on going to his six week check up with me. At his six week check up his pediatrician started listening to him, taking a little bit longer than usual. She began to explain that she thought he had more than a murmur, she told me that she wanted him to go to the hospital and see the cardiologist there. She stepped out to call the cardiologist and he told her that based on what she was hearing, and the fact that Conner wasn’t gaining enough weight, that he should be admitted to the hospital. Thank God my mother in law was there with me because I could just feel something was off. Dave, my husband, was home with our other children when I called him and told him to pack a bag for the hospital.

Once we got to the hospital they took Conner for an X-ray, an ultrasound of his heart, an EKG, and ran blood work. Hours later, Dr. Mark Hays came Conner_2webby our room, introduced himself as one of the main pediatric cardiologists there at T.C. Thompson. He told us that Conner had two heart defects, one being fairly large. Right then, once he said heart defect, my mind started going crazy and I quit listening to him. I heard the word defect and looked at Conner laying in the hospital crib and thought that he didn’t look like he had a defect, he looked perfect to me. I interrupted him and asked,” What do you mean by defect? It’s not like he has a hole in his heart or anything.” He just looked at me for a second and said, “That’s exactly what he has. He has a hole in the upper and lower chambers of his heart.” I think I quit breathing. It couldn’t be happening, not to my baby. Once I pulled myself back to reality, he told us Conner had an ASD and a VSD. The VSD was a rather large hole and he was almost positive he would have to have surgery. He didn’t know when he would need surgery, first he wanted to start him on Lasix to try and clear out some of the fluid he was retaining, once some of it cleared he hoped he  could have a better answer. It was a waiting game from there on out. They continued giving him Lasix and they would do X-rays every other day to check the progress. His weight still wasn’t increasing like they wanted and he still struggled to breathe.

One rotating resident asked me one morning if I knew what was going on with Conner and I admitted I didn’t. No one was explaining things so I could understand Conner3_webthem. She took the time to draw out a diagram, explaining what was going on, from then on I started keeping a notebook in the room so I could take notes when the doctors came in. They eventually made the decision for surgery. They didn’t think the ASD would close up on its own, the walls of his heart were misaligned so they couldn’t do a cath procedure to close the holes. Our cardiologist contacted Dr. Mettler, on of the surgeons at Vanderbilt Children’s Hospital, and explained Conner’s case. They decided he would need open-heart surgery at Vanderbilt. We spent eight days at T.C. Thomson and the eighth day we transferred up to Vanderbilt. During those eight days, we only got to see our other children, Sadie and Mason, for a few hours. Dave had to go to work (thankfully I was still on maternity leave),and I stayed at the hospital with Conner. My wonderful, God sent, in-laws brought the kids by on my birthday but they didn’t do well in the hospital. While it was very difficult to be away from them, it was easier to not bring them by often. Not seeing them everyday was one of the hardest parts, Mason actually said “momma” for the first time while we were in the hospital.

We went up to Vanderbilt on a Saturday, and met with Dr. Mettler on Sunday. He explained the whole process of the surgery to us and answered all our questions. Conner went into surgery theConner1_web following Monday. The day of his surgery I think was one of the most stressful, longest, and surreal days in my life. They came and got him at 6:30 AM and the surgery was finished at 11:18 AM, he was on bypass for 61 minutes. Dave and I have never been so anxious and scared but at the same time, I knew he was in good hands. I had complete faith that God would watch over not only Conner but the medical staff as well. I think the worst part for me was knowing they had to break his sternum, put his heart on bypass, and then wire his sternum back together. I just kept thinking that he was too young for something so drastic to happen to him. We got to go home that following Saturday, and Sunday morning Sadie and Mason came home- 15 days away from them was awful, they were so excited to not only see us but Conner too.  

Conner, while his surgery rocked our world, is blessed enough to only need the one surgery. We have regular checkups with Dr. Hays at home in Chattanooga and he and Dr. Mettler both say that he should be able to grow up and have no restrictions later in life. Dave has hopes he will play football – I hope he joins the chess team, haha! It took him over two months to gain one pound after birth, but now he is eight months and almost twenty pounds, he is doing so well!

Our hope is that all children born with CHD will have an early diagnosis, a successful treatment, and quick recovery. The words “no restrictions” and “normal life” are sweet to hear from a doctor after such a scary diagnosis. More research is needed so all children with CHD can thrive like Conner. Please join us in our mission of funding CHD research! https://projectheart.org/donate/

 

  1. Sharon brown   |   May 1, 2016

    My grandbaby had the bad add and a patent ductus when he was born so I understand he had carbs done and last open heart surgery very scary I was worried pins and needles the whole time he’s great now have some other issues but we’re dealing with those to with prayer everyday godbless your child they are a blessing every day

  2. Sharon brown   |   May 1, 2016

    Children are always our greatest gift I happen to treasure always

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