IT HAPPENED TO ME: My Daughter had a Heart Transplant

I was told she had a 1/3 chance a medication would help, 1/3 chance she would need a heart transplant, and 1/3 chance I would suffer the most unbearable loss of my life.
Publish date:
April 10, 2015
parenting, healthy, family, family drama, hospital, Heart Transplant

I always wanted to be a mother. I was one of those little girls that dreamed of a big family to cook for, a daughter to teach the intricacies of life, a little house with a picket fence.

Then one day miraculously, I was.

My daughter, Olivia was born one snowy morning in January. A healthy, beautiful, baby girl; she had all her fingers and toes, and the most angelic face I had ever seen. For seven and a half months, I was in baby bliss.

In late August 2007 all of that changed drastically. I began to notice that Olivia wasn't eating properly. She would attach to my breast, and then recoil in pain after a few seconds. I thought, as most breastfeeding moms do, that she was teething. Going through something called a "hunger strike," because it was too painful for her to suck with teeth coming in. I made an appointment with the pediatrician " just to be sure," I told my family. Really my gut instinct was that something was really wrong.

At the doctor's office the next morning, a Friday, I waited for Olivia to be seen. When the pediatrician walked in she took one look and said, " I'm calling an ambulance." At that point she assumed Olivia was dehydrated from not eating. Once admitted to the hospital, I experienced every mother's nightmare, my child hooked up to an IV drip and being poked with needles everywhere because they couldn't find a good vein in her little body.

I focused all of my strength and energy on comforting her. Everything and everyone else did not exist. When the doctor came in, she explained that Olivia didn't appear dehydrated and that from the blood work it seemed her bi-carbonate level was off. I had no idea at the time what that meant, and neither did the doctor, but she was to be transferred to another hospital for more tests.

At the next hospital they got her comfortable in PICU. A cardiologist came in and said, "I don't think it's her heart, but I'll be back tomorrow to do an Echocardiogram." The next day it was discovered that it was indeed her heart and it was in failure. Olivia had something called Acute Dilated Cardiomyopathy. I was told she had a 1/3 chance a medication would help her heart repair itself, 1/3 chance she would need a heart transplant, and 1/3 chance I would suffer the most unbearable loss of my life.

By Tuesday, she had gotten worse, not better and one of the doctors came to me and said, "I wish I could tell you she will be walking in here in 5 years to tell me she is in kindergarten. I don't think that will happen. We want to transfer her to Johns Hopkins, they have a machine called ECMO there and she will need it."

ECMO stands for Extracorporeal Membrane Oxygenation, and it takes over the job of the heart, giving the organ a rest.

The Hopkins team came and got Olivia at around 7 PM that night and since it was such a delicate situation, I could not ride in the ambulance.

When I arrived at Hopkins, I was ushered back to a little room to talk with the doctor. As we talked he was paged and excused himself. When he returned he said, “That was Olivia, she went into cardiac arrest upon arrival, they were able to revive her after two minutes and are hooking her up to ECMO right now. This should take about an hour and then you may see her."

That hour was very emotional. I felt powerless. When your child is sick and you can do nothing to help, it is one thing. When you can't even see them, look at them, it's devastating.

A surgeon came in and explained he would do everything in his power to save her. He spoke with such conviction and confidence I immediately felt at ease. After not sleeping for four days, and living in a hospital with your precious child's life hanging in the balance, that is a hard thing to pull off.

When I finally saw Olivia, she was hooked up to a monster machine, she had two large cannulas coming out of her neck and going into ECMO.

Thursday morning, the Transplant coordinator found me at Olivia's bedside. She explained that Olivia would be put on the transplant list, A1. A1 is the top of the list for dire patients. She also explained it could be weeks or months before a match became available. She also told me they might never get a match. Her doctor talked about a Berlin Heart, a device that would enable her to be awake and move around the hospital. That never came to be.

At about 11 PM, twelve hours after she was listed a nurse came running into the waiting room. "They found a heart! The doctor is on the phone and wants to speak with you!"

As I picked up the receiver, in a daze, I heard the doctor say, " This is a dream come true. This heart is a perfect match, I am flying to get it in the morning."

The next morning in the operating room, I gave her kisses through tears and began the wait. The nurse called and told me the doctor was held up, but they were prepping Olivia. That meant taking the old heart out and putting her on bypass, so all that had to be done was to sew the new heart in.

I needed to eat, but I didn't want to leave the waiting room, in case the call came in. The woman that worked the desk led me to a little room with assurance she would come and get me immediately if the phone rang. No sooner did I sit down, when I heard the sound of running footsteps. I looked out the door to see the doctor running down the hall, cooler in hand, with two armed guards.

"I just saw Olivia's heart go by!" I yelled. A few hours later, I was called with the good news, surgery went well and I could see her soon.

All of this happened in 7 days. Start to finish. She recuperated in the hospital for a few weeks and in early October she came home. At first, with a central line, and six medications, she was also being weaned off methadone. I became a nurse overnight. She was home! No matter how hard it was to insert NG tubes or change dressings, or regiment her meds. She was home! It was a miracle.

I live one day at a time and try not to look to far ahead into the future. It has been my Dogma since this started and that works for me. I also look at life very differently, and I try to smile more. I have gained perspective, but at a tragic cost. Another mother lost her child, and from that mine lived.

I owe everything to a stranger who decided to give the biggest gift, a gift that is the hardest to give, a gift of life. The gift of Olivia.