Nick: I know for me it was, “don’t think that you’re in it alone.” When we first came here, you feel like you’re here alone because, I mean I’ve been to Boston a million and three times and never stepped foot in Boston Children’s. So it was almost like a new place for me, but then some of the people we’ve met from day one—that’s why we’ve had a good support group. We’ve made friends at the hotel, we’ve made friends here in the hospital, we’ve had nurses that have looked after her from day one and who still look out for her, just asking, “How is she?” looking at her growth, how we are, how we’re coping with it. So I would basically say that anybody going through that, sit down in the family rooms, the chapel, wherever, have conversations.
Shana: Talk about it. Don’t keep it inside because that’s worse. Ask questions and talk about it. Don’t hide anything, because if you hide it then you’re going to go through it alone. The more we talked, the easier it got.
Nick: Yeah. Because I mean you learn so much from other people’s experiences. You learn some of the things that they did to cope, which made us say, “Okay, well maybe we need to try that to see if that helps us.” Everybody’s different, there’s always that little bit of something that you get from somebody that just helps you get through it, and even if it’s just to get through today.
– Nick and Shana, parents of Jade, age 6, Dextrocardia
Try and talk to people. Initially, I wasn’t talking about my feelings and it kind of backfired and it all came crashing down one day. Utilize the support that you have within your family, you’re never alone. There’s always somebody who’s either going through it with you or has gone through it. I think if you’re getting care at Boston Children’s Hospital, you’re in the right place. I don’t have any one little slogan or any couple sentences that I could kind of sum up everything. I think ultimately you are amazed as a mother the strength that you have that you probably never knew you had until you have to go through it. And it’s eye-opening what you can do, and the advocate that you can be for your child.
– Roxanne, mother of Amelia, age 7, Dextrocardia
I would say “Don’t lose hope.” We didn’t find out until after Austin was born, but I talked to some heart moms who were told of their child’s heart defect when they were pregnant and they were highly advised that they should terminate. And they have happy, thriving children, thank God. My biggest thing is just have hope and so much more can be done now, than 10, 20 years ago. Reach out, get support from other heart families, make the bonds with other heart moms because that’s truly what will really get you through it. It makes the journey a whole lot easier.
– Grace, mother of Austin, age 10, TOF
I would say my advice would be to do what I didn’t do. Which is I didn’t ask for help. I would reach out. My advice would be reach out and ask for help, and I would include in that, talk to your care team, talk to your doctor, let them know that you’re really struggling. You never want to do that with your doctor or your care team, people want to make it look like we’ve got it all together, and then if you look like you have it all together, they treat you like you have it all together. And I know I fell into that category because both of us are educated, pretty outspoken, but we didn’t walk in their door looking like we were falling apart, and so they assumed that we were doing okay. I would say reach out and ask for help, and I would also say reach out to whatever support system you’ve got, whether it’s family or friends. I just didn’t really do that. I think we tried very much to just sort of do it on our own and I don’t think that’s a good way to go necessarily. I really don’t.
And I think the other thing I would say, which I also didn’t do at the time, is certainly seek out some mental health support. I definitely did not do that, and I wasn’t on anxiety medication until years later, and I look back and say “Gosh I can’t believe I stuck it out then.” I think you’ve just got to reach out. I think the isolation people feel, and the not wanting anybody to think that you can’t handle this, drives some people, and it did for me, to be very private and not share what you’re really going through. And I think that that’s dangerous. I think, you know, maybe things didn’t need to be as hard on us, maybe things didn’t need to be as hard on Matt. I don’t know, hindsight is 20-20, but that would be my recommendation.
– Diane, mother of Jake, age 21, HLHS