A close friend of mine who lives out of state just gave birth to a baby
who unexpectedly has Down Syndrome as well as some fairly serious heart
problems that will require surgery in a few months. I have sent a card
and emailed her sister to see what I can do to help. Other than more
positive thoughts sent their way, does anyone have any ideas of what I
can do to help them, in either the short- or longer-term? The baby is
still in the NICU for the time being.
I know this was a while ago already, but I thought I would compile a summary of the advice I received regarding how to help my friend who recently gave birth to a baby who unexpectedly had Down Syndrome and some heart problems. It should be helpful for an archive search – and perhaps there is someplace on the site where the Powers that Be could incorporate this info, as well.
The good news is that my friend's baby is home, and the whole family seems to be getting into a groove together. He will need surgery in a few months, and is on oxygen in the meantime, but everyone seems to be hanging in there. Right now, along with the usual newborn stuff of constant feeding, soothing, changing and being completely sleep- deprived, they also have to keep track of the baby's oxygen levels and tank, and a million doctor's appointments. After speaking with my friend the other day, my advice to others would be to offer to go to appointments with them if they need it and you can do it (my friend said that she needs another pair of ears listening in order to make sure she gets the information, since she tends to be distracted by her baby) and help with transportation; and make sure they have a big calendar to keep track of the tons of appointments.
I was really touched by all of the personal stories and offers to speak with my friend. Thanks again to this great community for that. Here is the advice I received that would be relevant for others (though given the responses I got, I would also recommend posting a message if you want to find people to talk to who have some personal experience with Down Syndrome or other medical issues):
• reach out and let your friend talk freely when she is ready. [My friend] was really angry at all the people who called and then a) acted like everything was fine ("Are you SO EXCITED to have a girl???!!!!!") and those who didn't let her express her feelings of anger, sadness, and disappointment. People are so conditioned to try and be very positive but it seems to me that sometimes your friend will just need to be honest and that will entail hearing a lot of things that people would rather not hear -- it's hard to explain, but it's kind of a process of grieving with a friend for a living child????
• In terms of practical/concrete things, you could arrange to have food delivered/prepared or arrange some housecleaning help, since they'll most likely be spending much of their time at the hospital.
• I don't know how far they are from the hospital, but if they are a good distance, and the time has come when the hospital will no longer let them stay there, you could arrange for a hotel room nearby so they could be closer to their baby.
• If they have other kids, you could help arrange for child care for them, or travel to provide it yourself.
• You could take some time to learn about the baby's disability by reading a book [not just surfing the Internet for the latest info].
• Overall, make sure you say concrete things to them, not just "please let me know if you need anything," because they'll likely be too overwhelmed to think of anything themselves. Make sure you are available, any time day or night, and give different suggestions of how you or others might help so they have something specific to respond to.
• In terms of being there as a supportive friend, there are many things you can/should do, and many things you should not. I have found that typically people do not know what to say in these types of situations, and there are things you can and should say that are more helpful than others. DON'Ts: o Don't convey any kind of pity. o Don't minimize what they are going through. o Don't tell them they have a special child because they are special people. o Don't tell them they are saints, or say "I just couldn't do it, I simply couldn't handle it, you're such a saint." These statements imply that disabled people are so difficult that only a Saint would love and care for them. Their child is lovable because he/she is a child, regardless of the challenges that the diagnosis might bring. DO's: • Make sure you say "Congratulations." And say it often. They're new parents, and went through pregnancy, labor and delivery. Compliment the baby and the parents. Tell them that their baby is wonderful/beautiful/handsome, etc, and very lucky to have parents who love him/her. Remind them that they will make a difference in their baby's life. Tell them "I'm sure this news presents many challenges for you, but I know how strong you are and I am confident that you will figure out how to meet them, because what your baby needs most is love, and you're giving him/her tons of it." • Have them tell you about their child's personality/unique traits [not the disability]. Just as all parents do, they will love when you or others notice similarities between them and their baby's features/expressions. So make sure you comment on that - say "the baby has X's chin" or "The baby looks just like X..." If you visit, don't shy away from asking if you can hold the baby [once the baby is doing better of course]. • If they are comfortable speaking about it, acknowledge the grief that parents are feeling. Say "I know I can't take the worry away but I wish I could." Remind them that it will be ok - "There will be hard times, tears, and fear, but the love and joy will be so intense you will not be able to imagine your life without your little one!" Tell them that "Although I can sympathize with what your family is going through, I of course don't fully understand because I haven't been through it, but you have my support. Why don't you tell me About Down Syndrome and the heart condition so I can learn more about it?" • Remind your friend that she should really not ask people for their opinions who are not in her situation. There are so many different types of support, mainly in the form of groups, both in the community and online, and she should really try to reach out to others who have been through what she and her family are going through to get a realistic perspective. These groups can also be helpful in identifying all the special, positive/unique things that come with parenting a child with Down Syndrome, which all too often get overlooked and are not known to those of us who have not parented a child with a disability. • Remind her that no matter what they tell her, she must trust her own instincts. Remind her that the medical profession typically pathologizes disabilities, especially in babies, and that her child will likely develop beyond what they are predicting for him/her right now. No one can know the potential of a child. Just like the rest of the population without disabilities, kids with Down Syndrome have a wide range of IQs and there is no knowing what their potential is until they reach for it. Remind her that you can't predict the future for child. • As the child gets older, make sure you comment on something positive you observed, about their parenting or the child's development and don't focus on the disability. Tell them "Your child is really growing and doing so great, I think that is so wonderful." "Wow, your child really mastered X skill quickly!" Comment on how much their child has changed your friend's life or your life for the better - for example, "Your baby is teaching me more than we could ever teach him/her," or "We love your baby with all our hearts" or "You are so lucky to have your baby, he/she just brightens my day when I see him/her," or "I feel lucky and honored to know your baby."
• write her and express both sincere congratulations on the birth of their new baby! and perhaps a short note saying that you understand she is scared and worried now and that you are there for her. Send the new baby a present (the same as you would send any other baby - a cool brooklyn T or something fun)/ I think the biggest issue is that there is a total mix of feeling between having a new baby, feeling guilty, feeling like you didn't sign up for it and so much more. Just being there - and giving her space - is probably best. Offer to sit her other kids or make some meals for them to heat and eat.
• There is an nice website called "carepages".... carepages.com. You could offer to coordinate a carepage for her so that friends and family could stay up-to-date on her baby. One of my friends uses here care page to post pictures and video clips of her daughter with DS, info about upcoming heart surgeries, etc.
• You could do some leg work/research for your friend about DS support and family programs in her area, help her hire a lactation consultant with experience with babies with DS, get her a good breast pump for home, frozen meals and a deep freeze to store them in, etc., etc.
• Take a look at caringbridge.org. You might help your friends put together a webpage for their new baby that will enable them to stay in touch with friends and family, and enable their friends and family to be updated, all without the need for many individual messages at a time when they're too overwhelmed and busy to do that. That might be something really useful for them.