Words and images by Joni Schrantz
All signs pointed to a healthy baby. When I didn’t receive any news about my 20-week ultrasound, I called and specifically asked about the heart knowing that heart defects are the most common birth defect. “Perfectly normal,” they said. They were wrong.
My daughter Juniper’s delivery went just fine. Everything seemed great. We were discharged home the next day and began our lives as brand new parents. We were in heaven, minus the difficulties with breastfeeding. I quickly turned to the help of a breast-pump and bottle as she seemed to take an excessively long time to nurse and the bottle was quicker. Over the next two weeks she would develop a little grunting noise that we just thought was her thing. It was cute. Little did we know that grunting and poor feeding are signs of heart issues.
She was two weeks old when I schlepped Juniper to her very first pediatrician’s appointment. I was excited to meet my daughter’s doctor for the first time and to introduce her to my bundle of joy. Upon meeting Juniper, she quickly noticed that she seemed to be breathing heavily. I didn’t really think anything of it, being a new mom I just didn’t realize that anything was abnormal. She listened to her lungs and stated that she was ordering a chest X-ray. We immediately went to get the X-ray and about an hour later returned to her office where she said that Juniper’s heart “looked a little big,” and then sent us to the cardiologist next door.
I called my husband and told him to meet me at the cardiologist’s office. I had finally started to freak out a bit, I’m usually calm and rarely overreact to things, so I had been assuming that this wasn’t going to be a big deal, but it was starting to hit me that maybe things weren’t OK. He met me at the cardiologist’s office just in time for the doctor to walk in and somberly tell us that our newborn had a heart disease called dilated cardiomyopathy. Basically, her heart was incredibly weak, had filled up with blood because it was unable to pump properly, and had stretched out as a result of becoming overfilled. The blood was backing up into her lungs which is why she grunted and had to make a greater effort to breathe. In other words, we had an incredibly sick newborn on our hands. He walked us over to the hospital next door, where we were checked into the Pediatric Intensive Care Unit and Juniper was started on a cocktail of cardiac medications.
It was just 4 days later that we were told her only hope for survival would be a heart transplant. Our questions immediately went to quality of life. We had a sit down meeting with a transplant doctor and began learning the ins-and-outs of what raising a child with a heart transplant was like. This is how a transplant works: the recipient takes immune suppressing medications every 12 hours for the rest of their life. This is the only way their body doesn’t find and attack the organ because the body sees anything foreign as something it needs to fight off. At any time, the recipient is at risk for going into rejection, which simply means that the immune system has found the organ and is attacking it. Rejection is often treatable, but sometimes there is no beating it and it will kill the patient or require another organ. Fortunately, studies have found that babies tend to do the best with transplants because their immune systems are so immature. We were told the half-life of a heart that Juniper would receive, would be about 18 years. Then, unfortunately, she’d need another transplant. This is the hardest part about the entire process, the fact that a transplant doesn’t last forever, it’s like a ticking time-bomb. Second transplants are common and typically don’t last as long as the first, third transplants are very rare. Unless some pretty big medical advances are made in the next 20-30 years or so, Juniper likely won’t live a very long life. This is the part of our story that still haunts me.
Within a few days, Juniper was on the list for a donor heart and our wait began. When she turned 7 weeks old, she really started to tank and was close to death. We were out of options with medications, her only hope was a 200 pound machine called The Berlin Heart. It’s a left ventricular assist device, otherwise known as a heart pump. Our hospital had used them a few times in the past but never successfully on a baby so young or so small. The risk of complications increases the smaller the patient, therefore it was a surgery that nobody wanted to happen. We were told she had a 50% chance of making it to transplant and a 30% chance of having a stroke, one of the common side effects of being on the device. We had no choice but to go for it. She simply wasn’t going to make it otherwise.
The day of the surgery, we said our goodbyes and anxiously waited for news. About an hour and a half into a surgery that should have been 6 hours long the surgeon came into our room. Our hearts sank. We knew he was coming to tell us that she didn’t make it. Instead he announced, “We have a heart”. What? We were in shock. This must have been fate. We couldn’t believe the timing of this and neither could he. We began hugging everyone in sight, the entire unit was buzzing with excitement for us. We called our loved ones and told them the good news. Juniper was stitched up and wheeled back to the room.
12 hours later, around 1:00 a.m., the surgeon approached our room again. It was the exact time she was supposed to be heading back to the OR to begin surgery for the transplant. He walked into our dark room and sat on the edge of the couch and began to break the news that the donor heart wasn’t viable, Juniper would not be getting her transplant that night, and frankly he was worried because she was now in even worse shape than she had been going into surgery that morning. We were utterly defeated. We hadn’t felt this low since the day we received her diagnosis. We truly thought we would lose her the next day. Luckily, we were wrong.
Juniper went to surgery the next day to receive her Berlin Heart. She rocked her surgery. What followed were several complications and unfortunately she ended up suffering 4 strokes. The neurology team told us some pretty scary things: she may never walk, she may never talk, or she may be perfectly fine, there was no way to tell. Wow. We were left devastated, again, now even more worried about her quality of life. Were we signing our daughter up for a lifetime of worrying about a transplanted heart AND brain issues? Luckily she began improving within a few days and started regaining some lost abilities quickly.
Once Juniper stabilized on her heart pump, our real wait began. We lived in the hospital with her, one of us sleeping in her room every night, and staying by her side every day. I was able to work from the hospital room and we simply found a new normal during that time. We lovingly referred to the nurses as our roommates. The days felt long… always with one thing on our minds, how much longer? With that anticipation comes guilt, knowing what needs to happen in order for your child to live. How could we be impatient when we knew another family would be going through our greatest fear in order for our daughter to live? I often thought about the donor’s mother, it broke my heart to think about the parents that would be on the other side of all of this.
All-in-all, we would wait 6.5 months for Juniper’s heart. She received her donor heart on September 17th, 2014. The surgery went perfectly and after living in a hospital room for 6 months, we were discharged just 8 days post-transplant. We were finally getting to take our baby home and live like a normal family.
It’s been nearly 2 years since Juniper’s transplant. She has battled some residual effects from being hospitalized for so long. She developed an oral aversion unfortunately due to frequent vomiting and required tube feedings for nearly all of her nutrition until very recently. She is also speech delayed. We work with a therapist every week on both of these issues and we are seeing great progress. She doesn’t seem to have any significant issues due to the brain injuries she suffered and we are so incredibly grateful for that. Juniper is an infectiously happy, curious, and stubborn child, about as normal of a toddler there is. If you saw her, you’d never know the fight she put up just to be here.
On the one-year anniversary of her transplant, we sent a letter and a video to Juniper’s donor family. We showed them some moments over the past year that were all made possible because they said “yes” to organ donation. There are no words to describe our thankfulness. We just want them to know what their selfless act has meant to our family.
Before this happened to us, I never thought about children needing organs, or how that even worked. With adults, it’s easy, they make the decision usually at the DMV on a whim, on a random Tuesday when everything in their life is fine. With children, the parents decide. They have to make the decision only when they are going through the hardest thing they will ever go through in their lives. They are asked when it is certain the child will not survive. They are asked to think of others during their darkest hour. It makes the decision that much more beautiful, that much more loving.
Organ donation is a reminder of all the good in the world. Strangers who as their final act in this life, give life to others. I’m not sure there is anything more humbling than being on the receiving end of such an act.
As a mother I worry about my daughter and her fragile health. Some days, I ruminate on what the future will hold for her and for my husband and I. Will I have to endure losing her one day? What will being a teenager be like for her, worrying about life and death things instead of the normal teenage stuff? Then I think about the mother on the other side of all of this, who would give anything to have her child back to worry about in the first place, and I am once again grounded. It is a reminder to be thankful, and to not spend too much time wasting the very thing I am holding on so strongly to, time and life with my daughter.
To learn more about organ donation and how to become a donor, please visit donatelife.net today. You never know whose life you may save.