I can’t imagine what this is like. How do people get past this? Katie was four. She walked into the hospital with a bad cold and got airlifted to Boston with a lung infection. It was the kind of staph infection that used to only be found in hospitals but is apparently becoming more common elsewhere. There was some hope when she lived longer than expected, but she was on a lung bypass machine. They looked for surgical options but the infection had destroyed too much of her lungs and they took her off the machine.
I just can’t imagine. I know this isn’t mundane but I don’t have anyone to talk to about it and I just have to say, oh my god. My brother was seriously ill last year and yes, the thought of him dying was one I brooded about, but I never had to deal with it actually happening. Yes, they had been told death was a 90% chance early on, but then she hung in there and they talked about what would be involved in her recovery.
She has a little sister who is two. They are all getting preventative treatment and getting tested for the bacteria. How do they tell her what happened?
I’m so sorry for your friend, gigi. And I honestly don’t know how people get through it, although I’ve known people who have. I’d suggest the advice given by a good friend, whose 23-year-old son dropped dead of a heart attack from a completely unknown heart problem: Just be there to listen. She will forever be thankful for her friends and coworkers who were willing to just listen and be there for her.
She also is still, to this day, very involved in an organization for parents who have lost children, The Compassionate Friends. Your friend can find folks there who *have *been through what their family is going through.
That is absolutely horrible. I assume that she was taken to Childrens Hospital Boston which is coincidentally where I spent 5 of the most horrible weeks of my life waiting for my baby daughter to die. Sophie was born seemingly normal but had a hidden genetic timebomb known as Sulphite Oxidase Deficiency that is one of the rarest genetic diseases there is and is 100% fatal. She went into seizures during my birthday party and died 5 weeks later with her in my arms.
It is certainly the worst thing that can happen to you or at least I hope so. That said, I imagine it would be much worse losing a 4 year old than an infant. There was a family at our church that lost a 4 year old from a fluke bowel obstruction that killed him on the way to the emergency room. There is a picture of him in a memorial room and I can’t look at it unless I want to feel sick for the day. My daughter was 3 when her llittle sister died and we are all still screwed up by it. The good news is that we have a healthy one year daughter now and that made things easier.
Yes, she was and that’s the reassurance that everything that could have been done was. They said the staff there was amazing. I’m so sorry for your loss, Shagnasty.
As another who has lost a child, let me say you just do. You say a handgun – and of course who doesn’t feel that way? – but if you’re in the situation let me say it’s not a real option. Leave behind siblings and a grieving spouse? Your own parents? Grandparents?
Let me just say you want to die and you’re horribly grief-stricken but one day passes and then another and then you realize as much as you wanted to die of grief, you didn’t.
As with the Shagnasty family, I did have another child, within a year, and I think that pregnancy helped me a whole lot; a new life growing within gave me hope for the future.
She would be 14 now and not a day goes by I don’t think of her.
I don’t even want to imagine it. Losing one of my kids would be the absolute most difficult thing I can imagine. I know I would cry for weeks and need some serious counseling to be able to return to society as an intact human being again.
Oh Lord, I’m so sorry for your friend’s loss, gigi.
Before my daughter was born, my wife and I had to talk long and hard about my family history – first-borns die, and there are damn few exceptions to that rule. It’s dotted all over our family tree, including two nephews that lived two and seven days, respectively. I’m sure that seeing what those two brothers went through is a key reason why my third brother never had kids. So, understandably, this was a major concern for my wife and I.
Now our daughter is a bright, vibrant child nearing two years old. The thought of losing her now – simply unfathomable…
God this is awful. With five kids, the third of whom is learning to drive, I’ve wondered how and if I’d survive such an horrible thing, or how’d I’d help a friend or sibling. When I was very young - maybe 8 - a kid at my church died one weekend. He went camping with his dad, got sick, was taken to a hospital, and died of leukemia on Sunday. I probably think more about his parents now then I did then. I wonder how they coped and how people helped.
There’s not much more you can do but be a good friend, I suppose. Let them cry, talk about their little girl, help them remember her.
I am not sure if this will help, seeing as I’ve never lost a child, but just abide with her (and him and the other child). Long after the funeral is over, and “ordinary” activities are resumed, just let them be. And let them know that.
One of the most painful things I had to realize after my sister died (she was 46) was that people are good for about 2 weeks after the funeral etc. And then everything is supposed to be ok. No-it’s been 4 years now, and I’m better, but I still have moments of sudden realizations–heart stopping moments when I realize she is truly gone from this world. It can only be magnified with the loss of a small one.
If there is some way you can tell them that it’s ok for them to talk about her to you etc, that might be good. I also recommend the support groups and individual/family counselling.
I’m sorry for their loss, and the other losses mentioned in this thread.
I know what you mean, to a smaller degree. My best childhood friend died when we were 20 and even though we weren’t close like when we were kids, I still get shocked every now and then when I realize he didn’t continue living like we’re supposed to. And that was almost 20 years ago.
Childrens Hospital Boston is truly an exceptional place. We knew our daughter was going to die even before anyone knew exactly what was wrong with her but they kept trying to found out what it was regardless of the cost and time it took. They brought in expert after expert and they were all stumped. Finally they brought in a team pf Harvard geneticists and the oldest one had an idea. He had never seen whatever it was that she had but he remembered a mentor describing a weird case 3 decades before and he researched it over the next few weeks. He became convinced that it was the ultra-rare syndrome called sulfite oxidase deficiency.
After her death, it didn’t stop there. Children’s Hospital put together a cutting edge autopsy team to confirm that is what she had. At that point, we had genetic counseling to learn that there would be a 1 in 4 chance of any future child having it but our oldest daughter did not have anything like it and was safe. They also promised to develop an in utero test for the disease so that we would know in pregnancy whether the child was a fatal case. My wife got pregnant way sooner than we expected and there was still no test. Researchers ranging from Harvard to labs in France raced against the clock to invent this crucial test for us. It was developed at month 5 of pregnancy and my wife went in and has cells drawn from her abdomen. The samples went to France and one week later, we knew we had a healthy baby! Olivia was born on July 17th 2006. Sophie died on July 18th 2005 so it was almost like a replacement was sent 1 year to the day from the Heavens.
No one could save our daughter but Children’s Hospital Boston spared no resource to help us find the cause and determine whether any future children would have it and I owe them everything for that.
Shagnasty, that’s a heartbreaking, and lovely story. Thank you for sharing it. And kudos to you and your wife for having the courage to continue to live.
Gigi, Ellen Cherry, Shagnasty (again), and everyone else touched by losses so untimely, bless you all.
A friend of mine had a daughter who died at 14 months from Tetralogy of Fallot, after her second open heart surgery. She went into respiratory arrest at the hospital I work at, and I was the first person to the scene who wasn’t part of the code team. She died later that night, on our Peds ICU floor, while all of us were sitting in the waiting room. I had to explain to the other people in the room that the nurse coming in and saying, “She’s had enough” meant that there was nothing more they could do.
I still want to be a doctor, and yet I pray every day never to have to see another mother throw herself into a pile of her friends and family, screaming.
It’s really hard, even to be there on the edges. She was really more an acquaintance before this, but now she’s a friend. I was the person who stayed long enough to make sure the hospital saved a lock of hair, footprints, etc. She was a mess for a few months. The marriage broke up.
The little girl’s best friend was another girl, about four at the time, who was also at the hospital (I think…memory’s fuzzy) in the waiting room with us. Her mom explained it as best she could. One day Isabel piped up with, “Maya’s in my pocket with Elvis [her fuzzy toy mouse].” Kids have ways of dealing with things and keeping the lines of communication open between parent and child is important. This must be harder though, since it was so sudden and the bereft child is a sibling…
I think I’ve said this before in other threads on similar subjects but…don’t shy away from mentioning the child, or children in general. Avoiding is just as obvious as mentioning. If the subject of children of the girl’s age comes up, mention it and deal with what results. My friend said she was actually grateful that I could be direct about mentioning kids or babies or whatever. Even if it made her sad.