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12 Days of Giving Day 8: Jessica Brooks chose Monroe Carroll Children's Hospital at Vanderbilt
" I chose Monroe Carroll Children's Hospital at Vanderbilt because my daughter was diagnosed with a heart murmur when she was 6 months old at her "well baby" check up. This was a murmur that had been undetected to that point. We were immediately referred to a pediatric cardiologist for further testing at which time it was determined that she had a hole in the wall between the left and right ventricles of her heart. This is a problem because the right ventricle pumps deoxygenated blood to the lungs to become oxygenated while the left ventricle pumps the oxygenated blood through the rest of the body.
The hole would allow blood to slosh between to two and mix. I was told that this was not uncommon in newborns who are born a few weeks early and would normally grow closed by their first birthday. It's a
part of the body that just isn't fully developed yet due to coming early, however, she was carried about 10 days past term.
We were sent for regular echocardiogram a for the next 12 months to measure the size of the hole in hopes that it would grow closed on its own. Given that the murmur (a noise detected while listen to the heart beat that indicates improper flow of blood) was undetected until she was 6 months old, the doctors were not sure if she was born with the hole or if it developed after birth. After 12 months of monitoring the hole, it was determined that it wasn't getting any smaller and we needed to consider surgery to correct the problem. We met with Dr. Drinkwater at Vanderbilt Children's Hospital to discuss the risks and benefits and quality of life. The hole in her heart wasn't life threatening at the time, but it would definitely affect her quality of life. She would likely live a life of fatigue and get easily winded if we didn't correct the problem. Her heart would overwork itself on a regular basis trying to overcompensate for the improper blood flow, her body wouldn't get the oxygen it needs all the time because the hole would allow the blood that entered her heart through veins to the right ventricle (deoxygenated) to mix with the blood pumped into her arteries from the left ventricle (which should be oxygenated) to the rest of her body. The older she got the more problems she would have.
The surgery would be Open Heart. They would have to cut her sternum open just as you have seen on many adults. They would stop her heart, open it up, and use a piece of graft skin to stitch the hole closed. Once this was done, they would have to start her heart back and close her sternum. At 20 years old, never having dealt with any major surgery in my life, let alone on my almost 2 year old daughter, this was terrifying. I didn't know what questions to ask or what to
expect. I relied completely on the doctors and staff to tell me what I needed to know and prepare me for what to expect. Then we had to discuss the costs. At that stage of my life, I didn't have any savings. I was barely making ends meet, and definitely couldn't afford my insurance "out of pocket" for a major surgery. I didn't know what I would do.
By the time she was 2, we had elected to have the surgery. Her local cardiologist and Dr. Drinkwater, who performed the surgery, agreed that the operation should be done before she started school so she wouldn't fall behind. I was assured that children are much more resilient than adults, and that she would recover much quicker than I expected. Since her chest muscles were not developed, she would not have nearly as much soreness and tenderness from cutting through them. She wouldn't have as much pain in the recovery.
On our final consultation before the surgery, I completed some paperwork for financial aide and discussed a new procedure they were just beginning to use on females to make the incision on the chest laterally along the "bra" line under the breast rather than vertically, to minimize the visible scar. Dr. Drinkwater had not yet performed this incision, but asked my permission to do it this time in an effort to help with the covering of scars as my daughter grew up and wanted to wear bathing suites, V-neck blouses, etc. He was very helpful and thoughtful. He "held my hand" so to speak through the entire year long process leading up to the surgery and made sure I was comfortable with every decision before I made it.
She was in surgery for about 8 hours (8 terrifying hours), and no matter how prepared I was, there is nothing that could have prepared me for seeing my baby in the recovery room, waking up scared and in pain. I fainted in the floor when she cried out, but the nurses assured me that was only scared and not in pain. She was on enough pain medication that she shouldn't feel any pain, but waking up in a strange place most likely scared her. I wasn't fully convinced that was true until the next day at lunch time when she was up out of the bed walking around her room. As long as she wasn't pulling on anything, she seemed to be fine. Within 3 days of surgery, she was outside on the playground designated for surgical recovery patients (I believe it was on the 9th floor) playing like there was nothing wrong! The doctors and nurses all told me to let her do whatever she felt
like doing. If it hurt her, she would stop on her own. If it didn't, it was good for her to stretch and use the muscles as they healed. I was amazed!!
But I was equally as amazed when I received the bill in the mail. I didn't even want to open it. I let it lay on the counter for days before I opened it. I just knew I would be in debt the rest of my life. To my surprise, the bill was for $20, a doctor's visit co-pay. That's all I was ever asked to pay and I couldn't be more thankful. Vanderbilt Children's Hospital was more concerned about my daughter's care than the money they could make. A year later, the doctor fully released my daughter, with no further care needed unless any problems arise. To date (13 years), we have had absolutely no problems, thanks to God! " Donate to Monroe Carroll Children's Hospital at Vanderbilt
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