Immediate reassurance
One of my first questions when we met with the social worker was, “I know you’ve done this” (and she told me how many times they had done it) “but I need to talk to some other families.” And she gave us a list of three families right away, and we connected with two of them and still keep in touch with them. It was that type of support that really made this process more manageable – it was just this immediate reassurance. Both of the children that I’m speaking of went through transplant at about the same age as Hannah, and they could walk me through it.
Once I got to the transplant stage, it was like I needed to know exactly: “Tell me what’s going to happen. What is it going to be like? When I get the call, what do I need to expect?” Because I’ve never, ever in my life experienced anyone who’s gone through transplant, whereas chemo I kind of had some knowledge of through family and friends. These two mothers in particular really guided me through exactly what to expect, from the minute you got that call, to the minute she went in to pre-op, to the minute she came out of surgery, everything from what’s she going to look like to the tests that she would have to go through in the first few days. At least in my mind, I really felt like I had a handle on what it would be like.
[Later] I think the biggest thing that helped me was just reaching out to other families. I think that’s the one piece of the advice: that was probably the one biggest thing that got me through everything.
Mother of Hannah, 4
Reaching out
Mom: We would be happy to talk to other families that have questions, and answer questions and give them ideas – even on specific medical care and tasks that you have to do; finding ways to organize your house for a medically challenged kid, I don’t know – just reaching out to others. We did talk to some families that had gone through transplant before us, and they gave us some ideas.
Dad: For some reason it’s hard to do that, but you get a lot of good information from other families if you open yourself up to it.
Parents of Sophia, 4
Living in a vacuum
Being on the transplant floor, you definitely see the repeat hospitalized kids. And we have definitely had hallway conversations with them, or Meg will make faces for the little babies, or wear bunny slippers and they’ll all laugh, so we’ve kind of connected in this very casual way. I’ve had much more success connecting with families who have mitochondrial disease through a really great organization called mitoaction.org. Mito Action is an organization that is about support advocacy and education. It’s not about diagnoses, it’s not hospital-based, it’s not doctor-based, so the confidentiality restrictions are lifted in that way and you can really connect family-to-family in a way that’s meaningful.
On my wish list would be that there was a way that the hospital and the folks who are working with the families see similarities in kids because of a diagnosis or because of a personality style or whatever, and were able to connect them, because just because somebody’s on the floor doesn’t mean that I’m going to be similar to that family. I mean, we feel like we live in a vacuum. We don’t know anybody else in the world, in any place, that has had the series of things that are Meg’s diagnoses. When she had mitochondrial disease pre-transplant, we felt much more connected to the mito community because we had that. But now, even the mito community –we’re in a different camp a little bit.
Mother of Meg, 9
Comparing notes
We had a network of friends, other Crigler kids that we stayed in touch with, and they were all starting to do liver transplants at another hospital. It was a great network because we could all compare and contrast notes: you know, what are you going through, stuff like that. And that helped us make the decision to actually do liver transplant. Some went very smoothly, some went smoothly in the beginning and had bumps in the road, some had bumps all the way – one had major bumps. So it was scary. You like to hear the smooth ones.
Father of Walter, 11
Networking with other families
If you can get on a parent forum, fantastic. Such a great resource. Any type of family support thing away from the medical side – I think it really validates emotions. You go, “Oh, we’re not the only ones.” Because when we come in here, I know that it’s a transplant clinic and there’s a bunch of other people sitting there, but I don’t actually know them. We don’t do anything to mix socially, and they can’t because of confidentiality. So I highly recommend that: there usually is some sort of support network out there, and with the Internet and everything, you don’t even have to meet them. You can do it online, and that’s great. Because I belong to that Children’s Cardiomyopathy Forum, and I can ask them whatever. Like when we signed up for transplant, “How long did you guys wait? Eva is a status 2.” And no one really has an answer, but just knowing there are people you can say it to and they get it – as opposed to my non-heart friends, who are like, “She looks fine! What are you worried about?” So that’s a huge thing, to network with other families.
Mother of Eva, 13