Our Donor Thank-You Letter

We have just sent the most difficult letter that we have ever had to write. There are lots of letters to draw upon for adults writing on their own behalf, but very few for children, who cannot speak for themselves.

February 11, 2013

Dear Donor Family,

I would like to begin by thanking you for your generous gift. My wife, Stacy, and I, have had difficulty deciding how to write this letter, though we know it is not nearly as difficult as the decision your family made just over a year ago. We were very nearly faced with this same decision at around that time. 

I will tell you a little bit about our son Benjamin’s story, and what he has become. Ben was born in November of 2011.  Ben has two older sisters (Abby and Klara), and while Abby had some non-heart related issues when she was born, they were of a temporary nature and within a few days of birth, she was a normal baby. Klara, our second, had no major issues as a newborn.

Given the history of Ben’s two sisters, we felt sure that we would have no major issue with Ben. Indeed, for almost exactly one month, Ben was acting in precisely the manner that we had been led to expect with an infant. On the day he turned one month old, we started noticing that Ben was having stomach flu-like symptoms. Everyone else in the family had fought through a stomach virus the week prior, so naturally, we felt that it was Ben’s turn.

It was when he began having breathing issues and was lethargic that my wife brought him to the pediatrician, who looked at him and gave him breathing treatments. In the process of examining Ben, the doctors poked and prodded him, and he didn’t object the way a baby would. That is when the doctors sent Ben and my wife to the emergency room. Within a matter of hours, this situation escalated until the doctors informed us that his heart was much larger than normal, and that his condition (congestive heart failure and cardiogenic shock) was such that he would have to be sent from our suburban hospital in Illinois to a much larger and well-equipped hospital, where they could perform infant heart transplants. In fact, his situation  was so grave that they elected to transport him by air, as they were not sure if he would survive ground transport.

The next day, the doctors informed us that Ben had a condition called Dilated Cardiomyopathy (DCM), which is a condition where the heart weakens and is unable to pump strongly. This also means that it does not return to its normal size when pumping, and so gradually becomes larger.  The result was that the rest of his body was not able to get the blood supply (and oxygen) that it required, and so his other organs were not functioning well either. This is when the doctors began to mention the possibility of a heart transplant, though they were trying to ease us into it by suggesting it as a mere possibility. It also gave them a bit of time to determine if Ben’s heart, with the assistance of life support, would be able to recover in time.

Within a few days, the doctors informed us that Ben’s heart was getting worse, and that the support was not helping. This was when they informed us that he would need a transplant if he were to survive. They gave us the choice of declining, but who can really decline such a thing? Plus, with Ben being a month old, we had begun to see facets of his personality come out. As your child was probably a bit older than Ben, I’m sure you had gotten to know him or her, and we are sorry that this made things harder on you.

The wait for Ben’s heart was filled with ups and downs. During this time, his heart rate would shoot up to 300 beats per minute (bpm), and then go back down to 100 bpm. His resting rate was often near 190 bpm, whereas a normal infant would have a heart rate of about 120-130 bpm. For this reason, he would often have to be kept still, or even sedated, to prevent his rate from skyrocketing.

Stacy and much of our family and friends would often pray for Ben to stay well enough to make it to transplant time. On Christmas Day, Cardinal Francis George came by to visit and to pray for him. His first Santa photo is with him on a ventilator.  Though we do not really want to remember those difficult times, this is a picture we will always keep. Everyone hoped for a Christmas miracle, which did not come. We hoped that the medicine would help his heart to recover, even slightly, but this did not come either. New Year’s Eve/Day was another moment that got everyone’s hopes up. We eventually stopped attaching significance to a particular date.

Three weeks after he was admitted, at seven weeks old, we got “The Call.” This meant that there was a heart available to him, and we were relieved at his second chance at life. Our feelings of joy were tempered by the fact that the only way for Ben to live would be for someone else to die. It seemed so unfair that there was no alternative to this. Stacy had a good relationship with one of the chaplains at the hospital, and on many days, she would come up and talk for a while. Unfortunately, on this day she was not available, but one of the other chaplains visited and talked for two hours.

We prayed for Ben, for the surgeons performing the surgery, for the nurses and anesthesiologists, and for his donor family. We prayed that they would eventually feel peace knowing that their child was giving our child life. Ben’s surgery went without a hitch. One of our favorite nurses checked in on him a few times, and said that it was the most peaceful, calm surgery she had ever observed.

We are now about thirteen months post-transplant, and are grateful to say that Ben is a happy 15 month-old who is beginning to walk. He looks a bit like Frankenstein, stomping from one point of support to another. He is undergoing physical therapy due to the fact that he was on his back for about four months, and had a bit of a delay in gross motor skills. We expect him to be walking by himself very soon, and running after his two sisters.

On the subject of his two sisters, they are four and five and just adore their little brother, and they love to help him. He likes to follow them around (by crawling) and tries to do whatever it is that they are doing. Sometimes, he is a little too helpful, such as when they are putting together a puzzle.

Photo by Rachael Silvers

We have included a picture of Ben, to show how he was doing at his first birthday. That was about three months ago, but he looks pretty much the same, which is to say, very well. We cannot thank you enough for your selfless decision in your time of grief. We hope that knowing how much it was needed, and how it has helped our son, brings you some peace.

If you are open to it, we are willing to communicate with you in whatever manner is fitting. We understand if you are not at that place now, or ever,  but the offer is open.

Sincerely yours,

Joseph and Stacy (Benjamin’s Parents)

Of course, the original did not have web links.