By Kyle Crow
Daddy to Emerson
Congenital Heart Defect / Ventricular Septal Defect (VSD)
Born July 2022
Toward the end of my wife’s pregnancy, we went in for an ECV procedure. Our unborn daughter, Emerson, was breech and this procedure was an attempt to flip her since her due date was only three weeks away. During the procedure Emerson’s heart rate majorly dropped several times. This caused the doctor to stop the procedure and do an emergency C-section right there. So, Emerson was born 3 weeks sooner than expected.
A day after she was born, while still in the hospital, Emerson was diagnosed with Ventricular Septal Defect (VSD), which meant she was born with a large hole in her heart, explaining the drops in her heart rate during the ECV procedure. Basically, between the four chambers of your heart there is a small membrane like tissue that divides all the blood. So, when the heart pumps it pumps the blood to different parts of the body. Since she had a hole, the blood was mixing together and causing issues. It caused fluid around her heart and lungs, which by definition is heart failure. We were told there was a chance the hole could close on its own, but also she might need surgery to repair it.
When I was born, I had a hole in my heart also. However, after just six months it healed on its own. So, when the doctor first told us we were optimistic Emerson’s heart would do the same.
AS first-time parents, when you hear the doctor tell you that your newborn is in heart failure, your heart just sinks. Since her heart was working so hard, she struggled with breathing and eating. To help, they inserted a feeding tube that went to her stomach. This was the only way we could feed her for several months. We knew we had a long road ahead and with all the issues she started having, we know it was going to be a challenge and surgery was likely the only real remedy.
We hoped we could wait for surgery as long as possible. This would give the surgeons the best chance for a successful surgery. The bigger she was the more room they had to operate and less room for error. During the wait for surgery our dream was for our daughter to not have any limitations. We wanted her to be able to do tummy time and develop like every other child. We wanted her to be a normal little girl and to watch her grow up. We did everything we could night and day to give our little girl comfort until she was healed.
Unfortunately, Emerson’s condition progressively got worse. Emerson was in the hospital for the better part of her first five months. She was admitted to our local hospital about four times, rode in an ambulance twice, and had a couple trips to the E.R. At about four months old, we finally reached a point where we could not wait any longer; it was time to go to St. Louis for her surgery.
As a first-time parent, you can’t wait to do everything with your child. Unfortunately, we were in the hospital for a lot of Emerson’s firsts. Her first Thanksgiving was in the hospital. We were not able to take her to a pumpkin patch or all the things you thought you would be able to do. But a couple days before we left the hospital, Santa came to visit Emerson. It was her first major milestone experience and On Angels’ Wings was there to capture those special moments. We could not be any more grateful for them.
Everything changed once she had surgery at St. Louis Children’s hospital, which successfully repaired the hole in her heart! Although not immediate, all the struggles with breathing, eating, sleeping, medicines, etc., eventually subsided completely!
Shortly after getting home from the hospital Emerson was finally able to do tummy time and start taking a bottle like every other baby her age. Due to her not being able to do some of these things at birth she was developmentally delayed. Emerson started an early intervention program to help with bottle feeding, motor skills and crawling/walking. She had to relearn how to take a bottle. At just over a year old she was eating table foods, playing with other kids normally and mobile but still working on walking.
Now everything is great. After surgery, she was like a brand new baby. Emerson is now 2 years old. In this last year, she has completed physical therapy as well as started and completed speech therapy. She has made so much progress. She is completely done with everything and just acting like a normal toddler. She currently goes to her cardiologist appointment once a year. Everything has come full circle and we are so proud.
We cannot wait to watch our little girl grow up and see what she becomes. We are so thankful for all the doctors, surgeons, nurses, and therapists for all they have done. Without everything they have done for us we would still be struggling. In the future we will consistently see her cardiologist, but we are hoping there are no further setbacks.
We highly recommend On Angels’ Wings to families who have a medically fragile child. They are always there for you and there to help. They recognize what parents and families are going through. They understand the struggle and just want to be there for the children. Especially when they are stuck in the hospital and are going to miss major events like birthdays and holidays. Thank you OAW!
