The lights are dimmed. The gel is cold. The continual pushing of the ultrasound probe is becoming uncomfortable. I turn to the left. I turn to the right in an attempt to assist the technician in getting a better image for the anatomical scan. It’s been close to an hour. I know I am carrying twins, but this seems to be taking forever. My husband is eerily quiet sitting beside me. My husband, the physician certified in cardiac ultrasound, is silent. The technician steps out of the room to discuss the images with the Obstetrician.
My gut is telling me that something is wrong and the serious demeanor of the OB and the Tech when they enter the room frightens me. The OB cuts right to the chase, one of our twins, Baby A, only has 3 heart chambers. She is missing her right ventricle. I can not control the stream of tears flowing from my eyes and I am pretty sure a horrible sounding bellow escapes my mouth. My husband and I hold hands as the OB completes a few more scans.
I can remember every detail of that appointment. Walking down the hallway to the elevator feeling like the walls are closing in on me. The elevator ride lasting an eternity and another long walk down the hallway to my personal Obstetrician’s office. The sympathetic look on my OB’s face as he explains that I am going to have to transfer care to another hospital because mine is not equipped to deliver a baby with this condition. The endless flow of tears. The questions by my husband that we won’t get answers to until an echocardiogram is completed and we meet with the Pediatric Cardiologist. The questioning of God. We already experienced the death of our son, could we lose another child? The possibility is overwhelming.
Our daughter would be diagnosed with Tricuspid Atresia, a condition treatable with a set of 3 surgeries spanning birth to age 3 or 4. Over the next few months I learn a lot concerning the workings of the heart and lungs. During my 3rd trimester, as much as I am uncomfortable and retaining gallons of water, I am frightened for delivery and what it means for our daughter.
From the moment she was born, my baby girl has been a warrior. Her oxygen saturations and level of blood flow between the heart and lungs was high enough that she avoided the first of the 3 surgeries. A bout with Parainfluenza would keep her in the NICU longer than anticipated, but after 5 weeks she was discharged requiring no surgical intervention. Taking care of an infant is scary enough. Twins even scarier. When one of your twins has a heart defect, it is downright terrifying. But with the support of family and friends we survive the first 3 months.
Prior to her first surgery, my daughter has a cardiac catheterization completed to test pulmonary pressures. My husband has a shift at the hospital so I have to take her by myself. A friend graciously offers to watch her sister for the day. The cardiologist warns me that when she wakes up from anesthesia she will be groggy and not herself. But I’m not prepared for the emotional toll seeing my daughter like this will take on me. I can not put into words how horrifying it is. I make my husband swear that I will never go through that alone again.
At four months old, our daughter will have open heart surgery for the first time (a Glenn operation). It is the longest 3 hours of my life. I try not to focus on the clock in the waiting room and distract myself with mindless apps on my phone. Relief washes over me when the surgeon enters the room looking happy (well as happy as surgeons ever look). Our daughter handled surgery like a boss and we can go see her now.
There are so many tubes and wires. Endless beeping from the monitors. The smell of sterility. An IV line in her neck. The retention of fluid in her face and extremities. The incision spanning the length of her chest. A squeal from pain when she coughs the first time. Deep breath. Tears. Be strong, be strong, be strong. Your daughter needs you. I want to cradle her in my arms, but all I can do it kiss her forehead and hold her tiny hand. But yet again, our daughter is a warrior. After only 6 days in intensive care, we get to bring her home.
(Sidenote: During all of this, we sell our house, send most of our belongings to storage, and rent a one bedroom apartment so that we can remain in the area for surgery. One week after surgery we move almost 2,000 miles across the country!)
The next two years are filled with routine cardiac checkups and echocardiograms. In May we get the news that it’s time for her second open heart surgery, a Fontan procedure. She has another cath, this time my husband is by my side. But this surgery poses logistical issues. Since we live 2 1/2 hours away from the hospital, we will have to stay at the hospital for the duration of her care. A pediatric intensive care floor is not the place for a healthy 3 1/2 year old child but yet we can’t imagine our daughters being separated for a week or longer. My parents graciously offer to rent a house near the hospital and bring our other daughter to see her sister each day.
Once again my daughter slays surgery like the warrior she is. Yet this time surgery is more emotionally taxing on my husband and myself. This time she can tell us how much pain she is in. Let me tell you, that sucks. But for the most part recovery goes smoothly and we are discharged on day 8. Unfortunately two weeks later we end up being admitted to the PICU for a pleural effusion (fluid in the lungs). A relatively routine complication but none the less frightening. One that would earn her another scar, or rather, badge of courage.
If you meet our daughter now for the first time, you will see a healthy 5 year old girl. One who loves to go to gymnastics each week and when the snow melts you can catch her riding her scooter through the neighborhood. Outwardly there is no indication of her congenital heart defect. Only if you catch a glimpse of her scar would you know that she is a heart warrior. We have no idea what the future holds for her, and that’s okay. She may never need another surgery or she might experience kidney complications during her tween years. I know whatever comes her way, she will get through. She is a warrior.
You may not realize it, but chances are someone in your life has a CHD. Boston Children’s estimates that in 2 out of 10,000 live births, a baby will have Tricuspid Atresia, which accounts for 1 to 2 percent of all congenital heart defects. According to the Children’s Heart Foundation, close to 1 in 100 babies are born with a congenital heart defect, totaling about 40,000 babies per year. Congenital heart defects are the most common birth defects in the United States. February is American Heart Month and the 14th is Congenital Heart Defect Awareness Day. So on this Valentine’s Day wear red and take the time to acknowledge a heart warrior in your life.
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