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Could you spend a few minutes for Jackson? He's 2 months old and is about to be waitlisted for a heart transplant.
The family is friends of ours...their 17 year old daughter got pregnant last year and had this little boy in December. They knew about his heart problem in utero and got as prepared as they could. He's already had one surgery. He was doing well until this week, and now it looks they've decided that a new heart is all that will save him.
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My prayers are with him. Would the family mind if I put him on the Temple prayer roll? I think we're going tomorrow night.
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You know I'll say a prayer, poor baby. And for his family, man they must be going through a living nightmare. Posts: 14428 | Registered: Aug 2001
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Praying for little Jackson...and for his doctors and family. I cannot imagine his mama's fears right now. Posts: 1021 | Registered: Sep 2004
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Thanks all, and no, KQ, I don't think they'd mind at all. The more prayers the better. They are a Christian family and believe deeply in the power of prayer.
It's been a very difficult year for them. Discovering their daughter was pregnant was a shock. Then to find that the baby had an almost certainly fatal birth defect. Which was upgraded to a 70% chance of survival a month or so before he was born. He survived birth, has done well, and now this. It's been hard all around.
Thanks again, everyone. I really, really appreciate it.
Posts: 5948 | Registered: Jun 2001
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SM, I don't know the particulars in detail. The heart, as I understand it, is not working properly in two sections, so the other two sections are working too hard. Chris (Jackson's grandma) explained it to me soon after the problem was originally diagnosed, but it's been some months now and I don't remember the finer points. I haven't talked to her directly in a while (a mutual friend called me yesterday asking if I could keep the baby in prayer, and to see if I could take up some of Chris's commitments at church) so the latest info I'm getting is second hand. I'm hoping to get ahold of her tonight, so I might know tomorrow.
Thanks again everyone. I'll let you all know what happens.
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I'm sorry I didn't see this before. I'll add my prayers. I have a colleague whose son is going through this. I also have an older friend on the heart transplant list. It's terrible waiting for the news of someone's death as the cause of so much hope for oneself or ones children. But still, it is good that out of a tragedy, someone else's life may be saved.
Posts: 22497 | Registered: Sep 2000
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Pops, thanks for asking. Yes, I talked to his grandma a few days ago and they got him on the waiting list on the 22nd. He is in excellent health except that his heart is working too hard. She said that you'd never know he was sick to look at him right now. A huge blessing.
She said that the average wait is 6 to 8 weeks. In the meantime they're staying in an apartment close to Children's Hospital in Seattle. It could happen any time. There are many very difficult things about this, not the least of which is the seriousness of the surgery. Grandma is struggling with the reality that having a donor heart available means that someone else's baby will have to die, probably unexpectedly. For her, she's been aware of Jackson's heart problem for months, so the real possibility of his death is something she's familiar with and has come to some peace about. The thought that a family would have to suffer worse than what she's viewing their struggle as is very hard for her to reconcile. While at the same time being glad for Jackson's gift of life.
Jackson's mother is struggling with the recent discovery that she won't be able to graduate with her class as she'd hoped. Of course she is worried for her son...she had just hoped she could graduate with her class as well. So she had a few down days about it last week. I know it seems minor in the face of what is going on, but I think it was an anchor of normalcy that she needed.
All in all, things look good right now. Thanks everyone for your prayers! I'll let you know when the transplant takes place. Thanks again.
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6 to 8 weeks surprises me. The people I know on transplant lists must be considered to be much lower risk or priority. Both have been on the lists for years.
Of course, the fact that they've survived this long while still awaiting a transplant must mean something about their overall condition...
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Bob, it surprised me too, and Chris (Grandma) as well. But that's what they said. I haven't any idea how many babies this age get listed. I hope to heaven it isn't very many.
How old is your friend's son?
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Also, there is a much higher demand for adult hearts than for child hearts. Not many children, compareably, need transplants, so the list is much shorter.
A child can't use an adult heart, or an adult use a child's, so that is why there are parellel lists.
In our thoughts and prayers...the child, and the family.
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In case anyone is curious, Jackson is still waiting for a heart. He's also doing very well. He's currently in the ICU because of the medications they have him on, but he's alert and thriving. Reportedly, the doctors at Childrens regularly go in and visit him just to play. I get the impression that he's a "feel good" spot for them, since he is so ill, but doesn't act a bit like it. He's developmentally a little ahead of his age, and he continues to gain weight. All wonderful things. It is a trying time for the family, though, as long days at the hospital are wearing.
Thanks for your prayers! They are definitely being answered. I'll let you know when he gets a heart and how it goes.
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Jeni, are they still in Seattle? Is there anything I can do for them? Take them a meal, or some baby things?
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Yes, they're still in Seattle. I'll check with Chris and see what she says. That's an incredibly generous offer...I know she'll be very touched. I'll let you know.
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I hope he makes it. My son died of aortic sthenosis and my nephew died of Epstein's Anomaly. Now I have a nephew with leukemia.
My secret shame is that after they came and told us he was dead and that they had to act quickly if they were going to harvest organs for donation, we said no. Which is strange because I generally believe in donation and am a donor myself. I mean, obviously his heart wouldn't have helped anyone. Granted, I was borderline psychotic, and my husband had hepatitis.
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mothertree, no one expects to have to make those decisions. Don't feel ashamed because you weren't able to think clearly. You dod the best you could ((((hugs))))
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Jeni- I will pray for them. The waiting is so hard. We were told one to two years and waited about 6 weeks. I will pray that the right heart comes at the right time. The doctors were very surprised when they opened Stephen up to see that his heart was worse than they had expected. I pray that God will bless Jackson and his family with the strength and courage they need. I can't imagine being 17 and going through what I know his mom must be going through. She can email me if she needs another mom who's been there to talk to. I think my email is in my profile.
I know what the Grandma is feeling though. It is really hard knowing that your child is living because someone else died. But it does help to remember that the other person would have died anyway and at least the family is able to do something good out of that death. It is really really hard.
(((MT))) Don't carry guilt or shame around for saying no. Things happen and we live. Thats all we can do.
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Jackson got his new heart last week. He is doing very VERY well, and they think he may be able to go home (home!) by the end of the week!
That's all I know (I talked to Jackson's great-grandma this morning, who gave us this news), but I was thrilled to hear and thought you all might be too. Thank you for your prayers. They've definitely been answered.
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That is so wonderful! I'm sorry for the family that lost their baby, but I'm happy for Jackson and his family. Great to hear, and thanks for updating us.
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I hope he makes it. My son died of aortic sthenosis and my nephew died of Epstein's Anomaly. Now I have a nephew with leukemia.
