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.

Biopsy day!

Kind of crabby, getting hungry.

Getting weighed

Today was Ben's biopsy. We tried to get to bed early last night in preparation for getting up at 4:30. Of course, I still wanted to feed him at 2:30, just to try to get him to still have a full belly. We left here at about 5:15 am and got to the hospital at 6:15. We were supposed to be there at 6:30 in preparation for a 7:30 surgery time. Well, Ben did not actually get back until 8 am. They did the whole preparation during that time. Weighing him (he's back to 20 lbs 12 oz!) and asking us all the normal questions about eating, sleeping, development, etc. He did pretty well with the whole not eating after midnight and no liquids after 4. He was actually in pretty good spirits until about 7:30. Then he started to get really tired and hungry at the same time. Luckily they got him shortly after that. He was actually smiling as they drove his bed away. It took a little over an hour for the whole procedure.

Playing on the firetruck

We had the girls with us this time, so we went down to eat some breakfast with them. They were a little antsy. They enjoyed playing with the firetruck and they had brought their book bags with and filled them with coloring books, barbie dolls and other little toys. There was also a play area in the waiting room and one of the volunteers was sitting there doing crafts with the kids. The girls did not want to leave when it was time to go to Ben's room!

I went back to his recovery room to see him. I went back first so I could nurse him. Oh man was he mad! They had his legs strapped down using 2 blankets. Ben was NOT appreciative of that! He kept screaming and trying to turn over and get out. They also had tiny little knee braces on him so that he would keep his legs straighter. He was unhappy with all of this and just wanted to get down. The nurses helped me arrange the pillows so that he could lay flat still and nurse. We then went up to the regular room he would stay in. Instead of a crib they got him a regular sized bed so I could lay next to him. He also got some juice and crackers to eat. He really liked the crackers and kept shoving them in to his mouth. Even with me slowing him down, he ate a little too quickly and ended up throwing up, during his echo. So, then they wanted him to not eat for a little bit. He was not pleased with that. But, he was so exhausted (especially after the nurse gave him a sponge bath and changed his sheets), he quickly fell asleep, and slept for over 2 hours!

Eating his crackers

While he was sleeping, the cardiology doctors both came in to talk to us and examine him. We had already heard from the surgeon that everything had gone well. His arteries looked great, his pressures were good, and there was no indication of any rejection. They have to wait for the tests to come back to officially say that he has not rejected. And we will wait until Monday to determine if he will go up on his prograf (immunosuppressant), or stay the same. But, it is looking like most likely it will stay the same. Because he gained weight, he is going up on his cellcept (another immunosuppressant).  He was in a pretty good range for prograf, even with them drawing his blood at around 8. His meds are usually due at about 6:30. That is all the good news. The not so great news was, his hemoglobin levels were really low. They like a kid his age to be at about 12 or 13. He was at 8. So, he has anemia. We have to call hematology on Monday to follow up with them. We are not sure what they will do yet. The cardiologist said she wants us to see them to see if we can discover a reason for his anemia. It is possible it's caused by his medicines. But, she said usually they would see it a little low, but not as low as he has been, and not for as chronically as he has been. He has been really low ever since about 3 mths post transplant. We also mentioned that he has chronic diarrhea. This may be just due to his bactrim, which he got to go off of today! Another yay! Or it could be due to magnesium, though he is on his smallest dose ever. Or it could be norovirus. So many things that it could be. And lucky us, we get to get a stool sample from him. Fun times people. I tell you, I lead a glamorous life ;) They also want us to follow up with gastroenterology for that. Add in the kidney team that is also following him, and we now have 4 teams to consult with. Hopefully, we won't have to deal with kidney very long, and maybe GI will say it's nothing more than the magnesium or the bactrim. It's just all kind of overwhelming to have so many teams following him now. We are most likely going to go down to every 4 months for cardiology visits, with some blood work in there in between. But, even though we will probably only see cardiology every 4 mths, it looks like we will still be at Lurie around the same amount of time, or more often. :/

Waiting for his x-ray

So, after the cardiologists went through all of that with us, they let us know his discharge instructions. Basically, no baths for 3 or so days. Try to keep him calm. He can crawl around, but no crawling up the stairs. Keep the incision site clean. Yeah, that one is fun to do with a kid that has diarrhea :/ Call with any fevers or severe pain. Then when we were done, fed him and dressed him, we had to go down to the 4th floor really quick for a chest x-ray. Then we got to leave. At almost 5 pm. It was a long ride home, but luckily the kids all slept for most of it. Or maybe unluckily. I am pretty sure they will now be up all night, since they slept until a little after 7 pm. It's 9:30 right now, and they're wide awake! We got them McDonalds because they were really very good for being at the hospital for almost 12 hours! They didn't really get crazy very much and they saved the running around for when we were in the kids areas. They also were very good to Ben. Abby helped feed him crackers and Klara was trying to tell him it would all be ok, when he was screaming. :)

So, now we call GI and Hematology on Monday, wait for the results of the biopsy (though we're not too worried about that based on the surgeons assessment) and wait on his prograf level and take his stool sample to CDH. Luckily we don't need to bring it back to Lurie! Then we will go from there. Keeping my fingers crossed that these are all easy appointments, and not going to be permanent teams we have to deal with!

You know you're a heart mom/dad when.....

Every mom and dad have struggles in their lives. Kids get sick, it's scary! You might have a kiddo who undergoes a surgery or two. Maybe eartubes, adenoids, tonsils? Things like that are scary to any parent. When you're a heart mom, you might have to deal with that too, as well as a few other things. Some moms on my heart moms boards have posted things that show you know they are heart moms. Since February is heart awareness month, I thought I would do a post, including some of those things, as well as some things I have been thinking of over the past week. You know you're a heart mom/dad when:

•  When you carry sanitizing wipes in your purse, and hand sanitizer on the side of your purse, and are willing to hand them out liberally.
• When you hear someone sneeze and you unconsciously pull your child away from that direction.
• When you decline parties at indoor play places during cold and flu season.
• When you don't go many public places the week before a biopsy/cath/surgery etc, because you can't risk the illness. 
• When you ask people at the door "how are you feeling today? Here's some hand sanitizer. Please take off your shoes." 
• When you can talk about heart rates, respiration rates, diapers, milestones, and the weather, all in the same conversation. 
• When you are glad for new friends that know what you are going through, but not for the reason you became friends. 
• When you sanitize the shopping cart and then put a shopping cart over it before putting your heart baby in. Just in case.
• When you get to go right back to a room at the dr's office so your baby isn't exposed to others illnesses for longer than they have to be.
•  When even if your child is fast asleep, you go check on them, just to make sure they're breathing. 
• When you put extra blankets on your baby because they might get too cold. 
• When you have to carry 11 syringes of medicine if you are going to be gone for the day. 
• When you worry if your child spit out a little bit of his medicine. Was it 1 ml, or just a half a milliliter? Should I redose now or later or not at all? Will he reject if I don't redose? 
• When you have the hospital, transplant team, cardiology and transplant pharmacists phone number all on speed dial.
• When you are both excited and nervous for your child to come off of another medicine. Yay for losing the antiviral, but also, uh oh, now I have to worry about viruses. 
• When you take your child in for every minor illness because you never know if it is a serious infection, rejection, or just another cold. 
• When you are glad to hear him snore because it means he is breathing. And then you worry when he doesn't snore and have to put your hand on his chest to make sure.
• When you worry too much. 
• When you can't bring your child to the gym daycare with you because you don't know what germs are there and what the kid next to him might have. 
• When you have to figure out a way to explain to your preschoolers why your child needs a new heart, in terms they will understand. And then explain his scar. 
• When you also have to explain to your preschoolers how very important it is to wash hands and learn to cough in their elbow.
• When you bring your heart baby to the doctor and the first question your preschooler excitedly asks is, "are we staying at Ronald McDonald house again?!" 
•  When you pray/think good thoughts/send out good vibes for a miracle for your baby, and then feel sad for the child that lost their life to save your child's life.
• When you have a new normal that you never could have imagined. 
•  When you worry about the future, knowing that the longest an organ has lasted was 31 years.
• When you are happy for every day that your baby is alive due to the miracle of modern medicine. 

I'm sure there are many more. If you are a heart mom, or have any other "you know you're a heart mom/dad when" feel free to add them in the comments.