“I first found out I was pregnant on January 22nd, 2019. I was so excited! Of course I’m young, but that’s okay. My excitement was over having a forever best friend, since I have that relationship with my mom. As far as my pregnancy went, I was really sick during my first trimester. Everything seemed good, though.
My baby was growing and had a heartbeat, so I wasn’t complaining. My little sister was born with a heart defect called Scimitar Syndrome, so when I did my family tree at the OB, my doctor referred me to a high-risk OB just to be ‘safe.’ I had my anatomy scan at 18 weeks on May 1st. I had a gender reveal party that Sunday, and my mom was the ‘keeper of the gender.’ I was having a girl! I remember being soooo excited it was a girl, because I pictured her being my mini-me.
Two weeks later, I had my high-risk appointment with the mindset of, ‘Oh, there’s nothing wrong. This is just a safety thing. At least I get to see her today!’ So I get the cold gel on my belly and then she starts looking…then she stops and tells me to hold on a second. She comes back into the room with someone else. The other lady says, ‘I’m sorry, but it really looks like your baby has Hypoplastic Left Heart Syndrome.’ If she does, she’s going to need a series of 3 open heart surgeries over the next 4-5 years. We’re going to refer you to a pediatric cardiologist.’
I was of course upset, but I was more angry than anything. I asked myself, ‘Why would God give me a sick baby? I’ve done everything right throughout this pregnancy.’ I was also wondering, ‘WHAT am I going to do with a sick baby?’ I spent the next couple of weeks in a dark hole, just from being so upset and angry.
I had the cardiologist appointment when I was 24 weeks. They did an echo and confirmed that she did have HLHS. They were fantastic about drawing pictures and giving me articles to explain more about what it was and what’s going to happen.
For the remainder of my pregnancy, I was high risk so I might as well have lived at the doctor’s office. I went to the regular OB every week, got growth scans every 4 weeks, and got an echo every 4 weeks. I even had an all day long visit at Vanderbilt’s Childrens in Nashville. There is where I found out I would have to deliver in Nashville, 3 hours away from home.
As labor grew closer, my fears and worries grew too. I relocated to Nashville on September 16th, when I was 38 weeks pregnant, due to being so close to my due date. The next day I yet again had another appointment. Charleigh was acting very concerning on the ultrasound, so they went ahead and induced me then.
After 2 pitocin pills, an epidural, lots of nausea, and 34 long hours of waiting, Charleigh was finally here! It felt so heartwarming to finally meet the little human I’d been bonding with for 9 months now. Then, I instantly got scared for what was to come. I held her for 5 minutes until they took her away from me to transfer her to the Children’s Hospital NICU. From there, it was a really really rough journey.
She had open heart surgery at just 1 day old. After 2 open heart surgeries, 3 carbs, lots of pain medicine, and lots of IV lines, her heart began to give out. She was then listed for Heart Transplant. The average wait is about 3-6 months for a heart. I was terrified of her not making it until a heart became available. This was so scary and absolutely heartbreaking. Any of you who go through this know how terrifying it is.
A couple of days later, her lungs and heart were just too concerning, so she was put on ecmo until they could get the part to insert the pedimag VAD device. My little 2 month old was on full life support, again TERRIFYING. Yet even on full life support, her lungs were still weak and really sick. They left her on ecmo to help her lungs.
November 30th, 2019 was the worst and scariest day of my life. They pulled a drain tube out and her belly filled up with blood. My little 73-day-old baby was bleeding out. She had overcome SO much and, as it would turn out, a drain tube would stop all the progress. The doctors told me there was nothing else they could medically do. We turned to prayer. We made so many phone calls asking people to pray. We turned to Facebook to ask people to pray for a miracle. This was God’s will and He simply wanted her more. I was only 18 and now my baby was deceased.
Any parent who has a sick baby knows how scary it is to be told, ‘We just don’t know if your baby is going to make it.’ You know how scary it is to sit at the hospital every single day for hours upon hours not know what’s wrong or how it’s going to be fixed. You know how scary it is to have doctors look you in the face and say, ‘Our backs are against the corner. We just can’t do anything else for you, I’m sorry.’ These doctors, surgeons, and nurses really did work their butts off to help save these babies, but sometimes they just don’t win. Congenital Heart Disease is disgusting and it doesn’t care how old you are.
The biggest emotions I felt throughout this whole thing were helplessness, anger, and sadness. I got her beads of courage; it was so crazy to put a number to everything she had done: 3 emergencies, 22 echos, 72 infusions, 72 nights in the hospital, 25 needle pokes, 72 days on a ventilator, 169 tests and scans, 94 blood transfusions, 36 tube insertions, 23 days on ecmo, 4 cardio thoracic surgeries. IN 73 DAYS. People don’t experience that in a lifetime, and she did it all in 73 DAYS.
I only got to hold her 4 times in 73 days. She was in pain and hurting for 73 days. I never got to feed her in 73 days. She never got to leave the hospital for 73 days. She never got to go outside for 73 days. She never even got to leave her hospital room in 73 days. I never got to hear her cry in 73 days. I never got to see her without all the tubes and lines in 73 days. I was angry and I felt absolutely useless. Who doesn’t get to hold their baby whenever they want? Who doesn’t get to take their baby home? I was so angry about all of the things I didn’t get to experience with her. But I shouldn’t have been angry. I should have been happy I was blessed with a beautiful and strong baby. Some people don’t even get 73 days with their baby.
When I realized that, this is when I decided to turn something so painful and so tragic into something beautiful. Even though I couldn’t help or save my baby, I decided I could save and help other babies. I decided to donate 455 ounces of breast milk to a milk bank that then donates it to the local NICUs. For those of you who are angry about a sick baby or even the death of a baby or child, just keep praying. Families and friends of these parents, PRAY FOR THEM. I promise this is the HARDEST trial they will ever go through. I pray my milk saves your baby’s life. I pray for every single one of you parents to find peace and comfort during tragedy. I also pray your babies keep kicking their disorder, disease, or syndrome’s butt! And just know, through the pain, we can always turn to kindness.
A Fellow Heart Mama.”
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This story was submitted to Love What Matters by Taylor Prats of Knoxville, Tennessee. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.
Read more amazing stories about acts of kindness:
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Read more stories about Congenital Heart Disease:
‘She looks like she’s been submerged under water.’ We never left the hospital. Her 321 days of life were there.’: Couple welcomes miracle baby ‘hand-picked’ by his ‘perfect sister in heaven’ after she died of congenital heart disease
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