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It seems several of you have had questions. I do not mind answering them at all. I haven't ever really written up my experience in essay format but should do that huh?
Stephen was born with a heart condition called dilated cardiomyopathy. His apgar at birth was low but came up and there were no known problems prior to birth. About an hour after he was born we noticed he was getting a little dusky colored. Not sure if it was because the room was cold we were just about to call for the nurse when my doctor came in to say goodbye. He noticed the baby's color and he and my dh took the baby to the nursery for some tests. I fell asleep. Waking up several hours later and seeing that my husband and baby were not there I became very worried. My husband and the nurse walked in right after that to tell me that Stephen was very ill and needed to be transported to another hospital with a better Newborn ICU. At this point all they knew was that his heart was enlarged and not pumping. My doctor, wisely, would not let me accompany my baby so I sent my husband off with the baby. I had some very good friends come and keep me company for a little while before I fell into a very fitful sleep.
Right after discharge I spent the next several days at the NICU. They had a little room for parents to sleep in but we had to take turns with the other worried parents. They ran every test imaginable to try to determine the cause of his cardiomyopathy. After several days they came to the conclusion that it must have been caused by human parvovirus, or Fifths Disease. Upon reflection I do remember a short time where I felt flu-like and had a rash but other than those 2-3 days I felt fine my whole pregnancy. I never had a lacy rash like is typical for the disease. But since Stephen had parvovirus anti-bodies that was their best guess. His stay in NICU was, as you can imagine, very stressful. Other than the first hour of his life, I didn't get to hold my baby again until he was about 9 or 10 days old. He had IVs in every place they could stick one, including an umbilical line and one in his temple. He lost about a pound during that time. Originally they gave him a 1 in 4 chance of life, and from the look in the doctor's eyes, she felt that was being generous. After some very spiritual experiences, and many many heartwrenching prayers, a miracle occured and my little boy began to improve. At day 13 he was allowed to come home. The improvement between day 10 and day 13 was literally miraculous. He was on tons of medication to keep his little heart beating properly. It was very scary to take him home and realize the awesome responsibility we had to keep him alive.
Over the next several years he did very well. He grew well, though was a tad small for his age, but nothing too concerning. To look at him you would never know he was a sick child. We never limited his activities, wanting him to enjoy as much life as he could. We were told that his condtion would either a.) get better on its own, b.) get worse or c.) stay the same; there was no way to tell how it would go. For 7 years he did fine on his medications. When he turned 7 we put him in YMCA basketball. He loved it! But we noticed that our child who never got tired, would come home after the games and sleep for an hour or two. Very unusual for this overactive child. We took him to his cardiologist who ran more tests and determined that he was going into heart failure. He increased his medication and that worked for a short time. But later that summer he had symptoms of heart failure again. At the end of September they listed him for transplant. I could never explain how it felt to be told the news that our boy needed a new heart. There just aren't any words.
That started a whirlwind of activity. He had millions of tests to determine everything about his health. We had to get a pager so that we could be alerted as soon as heart came in. Boy, talk about stressful, waiting for that thing to go off.
Fast forward to December. I was watching the news on a Saturday night and saw a story about a private bus heading to Phoenix from Mexico. The bus crashed on the interstate killing most of the occupants. Two of the occupants, one a child, were at a local hospital fighting for their lives. I got a distinct impression that this was Stephen's weekend for transplant. All day Sunday I kept checking the pager to make sure it was on. We went to church and even during our choir number, I kept making sure the thing was on. We ran home after church to change to go to my mom's for Christmas dinner. We were rushing to get out the door since we were late when the phone rang. I expected it to be my mom but it was a transplant coordinator calling to see how Stephen was feeling and if he was sick. He wasn't and they told me to get him ready and come down to the hospital.
I called my husband, who was at work. Then called my parents to have someone go pick him up since we only had one car that was working. The kids and I bundled up and went to the hospital. The wait was hard. They have no idea what condition the heart is in when they call you. Since there is a bit of prep work, tests and such, they want you there and ready to go as soon as the heart arrives and is deemed good. My mom came and picked up my daughter and took her home with her. I kept the baby, he was only 10 mos old and still nursing. My husband called his mother who just *happened* to be in Phx visiting from Utah. They came down and arrived shortly after Stephen was taken into surgery. It was very early in the morning. I can't remember exactly when something like 3 or 4 am when they took him in. Some of the details are still fuzzy. I'm sure I could pull out the old posts from here to pinpoint it. A very nice nurse let me use a terminal on the peds floor to get online and ask for everyone's prayers.
The surgery went smoothly. Later on we found out from the doctor that the heart looked worse then they had expected. A blessing that transplant happened so quickly.
By the next day they had him up and walking, just a few steps at first but gradually working up to a lap around the peds icu. We had to bribe him with his favorite food (and nickname) Pickles. It hurt to see my "baby" in so much pain, wishing I could take it for him. But he was a real trooper and did well. It was wierd spending Christmas in the hospital but heartwarming to see so many in the community donate time and toys. The Marine Toys for Tots program came around and gave Stephen a present, and a few other organizations did as well. It was hard for me being away from my 10 mo old on his first Christmas (this was the baby we had tried for 6 1/2 years to have). My 10 mo old weaned himself during this time, I guess stress really doesn't allow for good milk production!
He is now 2 years post transplant and doing amazingly well. He grew literally by leaps and bounds, putting on something like 3 inches and 10 pounds his first year! It is amazing what the body can do with a good heart He has some emotional problems, mostly severe depression, because of all of this. He is behind in school a little but is learning quickly, making up for lost time. We still haven't found out any information about the donor though his transplant coordinator did say it was not the child on the bus. We wrote the family a letter a year ago expressing our thanks but have not heard back from them. Someday I'll remember to call the transplant offices and see what I can find out. We do know that the heart is big for Stephen's size. It is twisted at an odd angle to make sure it fit in his chest cavity. So it looks a little weird on x-rays and such but all his stats and everything look great. He just had a follow up cardiac cath and things look "brillant" as the doctor put it.
Anyway, feel free to ask any question you want. There is more I could type but my fingers are getting tired and I am at work so I really should be working Posts: 1132 | Registered: A Long Time Ago!
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I may not get a chance to respond quickly since I never know when I can jump online but I will get back to you!
Posts: 1132 | Registered: A Long Time Ago!
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posted
Was the transplant done in Phoenix or at University hospital in Tucson? I live in the Phoenix area and have a cousin who was born with a heart defect. He spent a lot of time in St. Joseph's hospital in Phoenix.
i'm glad your son is doing well.
Posts: 4569 | Registered: Dec 2003
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I am very happy that things worked out for you and your family... I have a 7 yr old girl and a 1 yr old boy, and I can honestly say that I do not know how I would have the strength to cope should anything ever happen to either of them...
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That was really interesting Wendybird. Not long ago, there was an alert at church that Fifths Disease had surfaced in one of our prominant (read, very active) families. This was to let any pregnant women who might have had contact with members of that family know. I had no idea this is what could happen. I'm so glad to know your boy is doing so well.
Posts: 5948 | Registered: Jun 2001
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posted
The CDC publication on Fifths disease excludes birth defects other than anemia. How odd.
I did suffer a rash during my first pregnancy. It was somewhat early on. I always wondered if whatever caused me to have the hives might have affected the baby. They never did find an underlying cause for the aortic sthenosis, and there isn't any known mechanism for it to be related to the Epstein's anomaly that my sister's child had.
Posts: 2010 | Registered: Apr 2003
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posted
I remember our doctor saying something about writing an article about his case. I did go into early contractions right after I was sick but my sickness was so mild that it wasn't even something I thought to tell my doctor.
The type of anemia attributable to fifth's disease is a very serious anemia, I can't remember the exact name now. Its not a typical, give 'em more iron type anemia.
But the doctors were very surprised that my baby had such a dramatic reaction to the virus. I was at the beginning of my 8 month when I got it. It was highly unusual. And again, its their best guess. It was the only thing they could identify as a possibility. We do know his heart was fine when I had an ultrasound at 6 mos. My OB looked at the heart quite extensively (he never really knew why he did because he usually didn't spend that much time, I think he was guided).
Posts: 1132 | Registered: A Long Time Ago!
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My brother's baby had a heart defect. Ten years ago, he would not have survived, but they know how to treat the condition now. They live in Phoenix as well, and received amazing care. (I wish I could remember the name of the condition.)He is perfectly fine now.
At the time, my brother was running for office in the state, and his opponent used his absence from the Senate as a dig against him, saying he had missed many votes.
Posts: 10890 | Registered: May 2003
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Apparenlty the ability to treat a defect like my son had has not improved much in the last 12 years.
Part of what made it really hard for me is that I had this idea that doctors can do anything, or that God would intervene. So when he died I had me a nice little psychotic break. Posts: 2010 | Registered: Apr 2003
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MT, I am so sorry, and I remember being so scared thinking of my little nephew if it had been ten years ago. I cannot imagine what it is like to lose a child, and yet I imagine it every day, if that makes sense.
Posts: 10890 | Registered: May 2003
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posted
Interestingly enough, his zest for pickles is weakening some. Maybe he ate too many
I'm sorry MT. It is really hard. We face the knowledge that our son will most likely die before we will. It is so incredibly hard. I can imagine what it was like to loose your new baby. We almost lost Stephen. If the doc had not induced me 2 wks early we would have lost him. I'd give you a big huge hug if you were here. Hanging on to faith is so hard when faced with this kind of challenge. I have struggled with serious depression on and off through the years because of this. Oh heck, I'm gonna start crying an I'm at work. Better go on...
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I just saw this thread for the first time. Thanks for sharing the story. I remember that bus crash. I wonder if that child survived?
Posts: 6367 | Registered: Aug 2003
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quote: He has some emotional problems, mostly severe depression, because of all of this
Do you think his depression is just from the trauma of all of this? Or do you think maybe some of it is a side-affect of all the drugs he must take (in order to keep the new heart)? I mean, it is wonderful that this worked out so well, and that you son is growing so much and the new heart works so great. But I'm sure you have to give him anti-rejection drugs, and I've always wondered what the long-term affects of those are, since they have to take them for so many years...
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PSI- No, that child did not survive. He died the morning Stephen received his heart.
FG- Many transplant recepients go on to receive a new liver as well as years of drugs take their toll on the liver. I am researching ways to support his liver function naturally that do not interfere with his medications. It is difficult though because there is so little testing done. My family has a tendency towards depression so he may have suffered from it anyway, but his health has definately contributed in a very significant manner to his depression. I did try to wean him down off his wellbutrin but it was not successful. I do pray to someday have him off anti-depressants. I want him on as little medication as possible for obvious reasons.
I did put a call in to try to find something out about the donor but haven't heard anything yet. Supposedly the transplant co-ordinator was supposed to tell us any info allowed at the time of transplant but to my recollection we weren't told anything.
Posts: 1132 | Registered: A Long Time Ago!
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Wendybird, thanks for sharing your story. I am so glad he was bale to get the transplant in time. It sounds like a string of miracles.
Mothertree, I am so sorry about your loss. I knew that you had lost a child, but not anything about it. Posts: 1021 | Registered: Sep 2004
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Nathan is my miracle baby - in and out of PICU as an infant/baby/child . . . doing so well, now - and still that kernel of fear in me - what will happen when I am not there to monitor medications, and all the other pieces that moms/dads monitor for their children . . .
Bless you, Wendybird - you and your family.
Posts: 5609 | Registered: Jan 2003
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He has some emotional problems, mostly severe depression, because of all of this. He is behind in school a little but is learning quickly, making up for lost time. We still haven't found out any information about the donor though his transplant coordinator did say it was not the child on the bus. We wrote the family a letter a year ago expressing our thanks but have not heard back from them. Someday I'll remember to call the transplant offices and see what I can find out. We do know that the heart is big for Stephen's size. It is twisted at an odd angle to make sure it fit in his chest cavity. So it looks a little weird on x-rays and such but all his stats and everything look great. He just had a follow up cardiac cath and things look "brillant" as the doctor put it.![[Razz]](tongue.gif)
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