Seattle 6-year-old Mitchell Smith’s journey toward heart transplant began when he was still in his mother’s womb.
Almost on a whim, his mother, Kasha Smith, decided to have a free 3D ultrasound in her fourth month of pregnancy. It and a second ultrasound confirmed that Mitchell had Hypoplastic Left Heart Syndrome, leaving the left side of his heart severely under-developed. Doctors predicted that Mitchell would need at least three open heart surgeries to repair and strengthen his heart.
While still a baby, Mitchell endured two of the surgeries. But just before his fourth birthday, his doctors determined that the operations weren’t going to be enough. He would need a heart transplant to save his life.
In May 2011, Mitchell was officially put on the heart waiting list.
Earlier this year Mitchell’s family got a call that a heart had been found. Unfortunately it wasn’t a good match. The “dry run” as Smith calls it, had one benefit: It was the first time the generally cheery boy admitted to his mother that he worries “about doctors having to cut me and going into surgery.”
The family struggles with the wait and the knowledge that the transplant is not the final cure for Mitchell; the longest that an infant heart transplant patient has survived is 20 years.
“We stay away from the word ‘cure’ as it’s not a cure, just a different route that will hopefully buy him more time, and more quality time,” says Smith.
We asked Kasha to share her thoughts on the family’s (which includes dad Mathew Smith and siblings Taylor, 8, and twins Sienna and Ronin, 2) long wait for a heart. Her responses are below.
What is Mitchell’s health like right now?
Right now Mitchell is doing pretty well. There are some important medications keeping us at that point right now. Mitchell still pretty much regulates himself, but he definitely has less energy than other kids. A climb up the stairs leaves him out of breath and tired. There are days he asks to be carried a lot, and others when he wants to do it all on his own. We have been very fortunate to have stayed out of the hospital for the most part this past year. When we first started, his was in every month for four days for infusions to try and lower his antibody levels. He had a couple of stays due to dehydration as well. My biggest hope for Mitchell is that a new heart will allow him the energy to keep up with his peers and his siblings – that he will be able to develop the strength to do all the things he wants.
What has the waiting been that like for you as a parent?
It definitely is not easy. After a certain point you really begin to wonder if he is even going to get the chance. Also, with being listed we have to stay within a certain travel range of Seattle, so it’s hard to tell him that his siblings get to go visit Grandma and Grandpa, but he can’t. At the same time, we know that we are so very fortunate to be
waiting at home and that Mitchell is strong enough to go to school and live a little while waiting.
What strength do you draw on to get through the stresses of having an ill child?
My faith, my husband, my children, my family, my friends, and our “heart” family are all vital parts of making it through. No matter how hard the road has been, we have always had some amazing blessings put there for us. Both my husband and I come from close families, and have been blessed with their love and support throughout this journey, but being military has meant that support comes from a distance … not always in person.
We are also were blessed with the kind of friends that integrate so closely in your lives that they are family. The ones that aren’t scared away by your special needs kiddo, rather incorporate all your children as though they are cousins and allow me to vent and be “normal” too. They were there to take kids for the night, weekend, week, or whatever else was needed when we rushed three hours away for an emergency, or stepped in for childcare when I had to be with Mitchell for doctor appointments. They understood the special needs of ALL my children, so I didn’t have to burden myself with feelings of failing one child emotionally while tending to the physical needs of another.
Through our transplant journey, we also began to make great bonds with other “heart” families as we became regulars up at the hospital. There is a great gift in having other parents to talk with who know the ups and downs, who can speak medical jargon without a dictionary.
How do you feel about the surgery?
I’m scared. There are days I wish I was naive enough to think that a heart comes, we fly through surgery, and everything is great. We know, anything can happen. There can be complications, there can be infections. I would be lying if I said I’m confident there will be a great outcome, but I am confident that Mitchell’s team will do everything in their power to make that happen. And we hope that all goes well and Mitchell has a second go at a strong life. The part that pushes us forward is that without this there is no other road. Mitchell’s own heart will give out on him eventually, and his quality of life will continue to decline as his heart failure gets worse.
Do you feel prepared for the day your son’s new heart comes?
I think both my husband and I are as prepared as one can be. I think in some ways its harder that we are home and he is so “healthy” for now. I think we definitely had a reality check when we had our first “dry run.” My husband and I became very aware of our excitement, yet fear over the whole situation. Being ready, but not ready. Maybe more importantly, we got a glimpse of how Mitchell really felt.
How will you think of or relate to the donor’s family?
I think it’s the common feeling of transplant recipient families that there is no amount of gratitude to repay a family for their decision to give another a chance at life in the darkest of their own hours. I hope that one day, if Mitchell gets his heart, that we would be able to contact his donor’s family. There just aren’t many words to adequately describe what we feel.
What is your son like? What do you feel when you watch him?
Laugh….I don’t know that one can properly describe Mitchell in words. He knows what he wants most the time and is not afraid to express it. He knows just how to win all of his nurses, teachers, etc. over. He has figured out that his sweet little smile will get him just about anything from people besides mom. He also LOVES music. He use to have little dance parties with his nurses, playing his favorite songs on his kindle. He sings along and asks me to turn up the volume when certain songs come on radio in the car.
Watching him, I’m humbled. He goes through so much, but takes it so well. I know for him it’s just life, but I am proud of what he has overcome.
What have been the hardest moments for you?
It is definitely a crazy roller coaster ride. The worst moment was probably just over a year ago. We were in the hospital for almost a month due to some gastrointestinal problems. His little body was having a rough go at it and we had to have the discussion as to how far do we go. The realization that he may wait a long time – and what do we do if his body truly fails. Luckily he recovered. Maybe hardest though, is the number of families we have watched lose their little ones while waiting, or whose surgeries had some tough outcomes.
How much do your kids know about Mitchell’s surgery and future?
Mitchell asks a lot when they are going to get his new heart. Of course, its hard to have to tell him we don’t know. I’m pretty sure he knows more than a lot of 6-year-olds in terms of what will happen when he gets a heart and where that heart comes from. I’m always honest with my kids and answer their questions as well as I can at their level of understanding. Our dry run gave us an opportunity to see how Mitchell really felt about it, and has led to more talking when he wants. When he said he was scared about surgery, I told him it was okay.
And told him a secret. Mommy is a little scared too. I asked if he knew that, and he said “no”. I asked if that made him feel better knowing I was a little scared too, he said “yes”.
