Rarely do I ask for advice here, so this is an anomaly. If you have been through something similar, please let me know what would have been the most useful assistance for you.
We just found out that our friends’ baby has been diagnosed with Spina Bifida in the second trimester of pregnancy. They have several more months before she will deliver. It is my understanding that immediately after birth the baby will need two different surgeries. The family also has another child who will be 3 years old when the baby is born.
They have two other adult family members with Spina Bifida, so they are fairly familiar with the possible outcomes. I think they are hoping (based on talking with doctors) that the best case scenario is lower limb paralysis with no cognitive impact, but some kind of brain damage is also possible.
I am looking for advice about how we can best support our friends during what will be a very stressful birth, surgery recovery and long process of physical therapy/medical interventions for the baby.
Obviously, we will offer to bring them meals and help with childcare, but beyond that?
I have absolutely no experience with SB, but my niece was born with a hole in her heart -requiring open heart surgery in her first year. I think the most important thing is, what you have already thought of-meals, child care, just being good thoughtful friends. Fortunately, they do have experience with SB. With my sister, I know there was a lot of denial and confusion, doctors with different views about how soon to have surgery. My sister scheduled and cancelled a few times, because it is just so scary to see your newborn go through major surgery. This created an ongoing low level anxiety for my sister that, anyone who didn’t know her real well would miss, and think she had it all under control. So that goes back to being thoughtful, not waiting to be asked for help, offering random hugs, surprise lattes-you know, whatever most makes your friend smile and not feel alone in this.
The other thing I learned is, don’t try to be an expert on the medical end-they are overloaded with medical experts. If they want to talk through the decisions they are trying to make, fine-but don’t offer opinions just support. I know this was a hard thing for my sister in that everyone had a “neighbor’s granddaughter” or something “and they did this or that.” I hope things go as well as possible for your friends. ~lmc
In addition to what you already have thought of – I would also try (as a friend) to still celebrate and happily anticipate this birth. I think it can be so easy to start the “poor so and so” routine. But these parents aren’t to be pitied (as I am sure you know) and their soon-to-be-born child is a miracle (as all babies are).
So, I would try to do the best you can to be able to share those kinds of thoughts and feelings. Yes, listen to them when they need support but also be willing to celebrate what is a wonderful time as well. None of us (who aren’t key players in the situation) need to make it apparent that we might see it as bittersweet or ambivalent. The only people who get that right are the parents, and then only if they choose to do so.
So get yourself ready to look for new baby gifts (start now, you might find one by the time that baby is born ;P) and be happy for them. They are having a baby!
the advice you arealdygot is really good, especially about not becoming an expert on the disease. But one area of research you could do is look into any special needs that might arise as far as the nursery. Once they bring the baby home, they might need supplies specific to the babies needs, so keeping an eye on that and helping them source those out quickly would certianly be of great help.
One of my very closest girlfriends has a child with a serious genetic disorder. She always said what she couldn’t handle was the pity, people stopping the calls, etc. because they just didn’t know what to say or do. She needed support, and a shoulder to lean on because sometimes, she felt it wasn’t fair and she had to be allowed to vent. In the early days, we’d go to the hospital and stay with her son so she and her husband could get out for an hour. When they got home, we brought food and toys and various other things as we would for any other child. Because of her child’s condition, she couldn’t be anywhere where there were lots of people and germs and such so weather permitting, I always made a point of calling her and going out for walks with them so they could get out of the house. I asked her about her son’s condition so I could be comfortable around him and see to his needs as well. I think just being there for them is the main thing. In their case, perhaps helping with their older child as his/her life will change a lot as well. Good luck to your friend!
My best friend from college went through this with two of her three boys, and I’m happy to tell you that they both recovered 100 percent and are completely healthy, active, fabulous boys. I saw them last weekend, and they are playing soccer and hockey non-stop and traveling abroad and tearing up the gifted programs at their school and rooting hard for the Red Sox in the ALCS. (Maybe that last part isn’t what you’re aiming for …)
I didn’t live near my friend when most of this was happening, although she did travel to a hospital near me for one of the surgeries and I was able to go there and be with her at the hospital for some of the time. I remember that one afternoon we went to a museum show, just to get out of the NICU and re-focus a bit. She was open to that and seemed to enjoy the break, although I’m sure that would vary person to person.
What others have said. Particularly what Chicago mama said. Be happy and not pitious. It doesn’t mean you can’t be supportive and empathetic during the hard times, but this is not a tragedy. The family may have to grieve the loss of the able bodied child they expected, and thus will go through all the usual stages of grief as if a loved one died. But there will be a light on the other side, which will be their new baby and it will all be okay. Have high expectations that this child will have a good life and will accomplish a lot and bring joy to the family.
Also, and by writing this I can see this won’t be a problem for you anyway, stick around. Stay for the long haul. They will probably lose many friends who can’t handle it or are to insecure with themselves to know what to do and will avoid them. Sticking around and just being available and open to learning what they need is probably the best thing you can do.
I know a lot of stuff specific to SB as far as adaptive equipment and bowel and bladder issues and other stuff, SB eventually is really just a Spinal cord injury at birth and some things are the same as SCI and others are unique to having it at birth (i.e. bowel and bladder functions differently than someone who developed SCI later in life after developing sphincster control, etc.). But this is stuff they might already know or can find out through the SB advocacy groups. However, if you or they have any specific questions regarding the practical logistical stuff…I’d be happy to try to answer them.
Oh! one more thing! With all the information about folic acid preventing SB, they will probably have friends who guilt trip them or gossip about them as if it is their fault or they shouldn’t have the baby. Folic acid has been shown to reduce the incidents of SB, however…in cases of heredity (and because the whole world is essentially a crap shoot anyway) they shouldn’t be made to feel like they are responsible for this. Not that you would do that, but they might get that from others, so reinforcing that the bad parts of SB aren’t their fault and the good part of SB is that they are actually having the baby is the greatest gift they can give as parents. The abortion rate for SB (which often can be come a comparatively minor disability) is really high. I think it is great that they are giving it a go. And great of you to want to support them.
I think what I would most appreciate would be the things you’ve mentioned. If financially able, I think a gift certificate for a cleaning service to come in a couple of times would also be greatly appreciated.
Oh-the folic acid comment is important-though I don’t know how much you can do to mitigate it. I can’t tell you the number of times in my life (monthly) that people have called me a “thalydimide baby” and even pretty much told me that my mother caused my birth differences through some fault of her own and is now just lying to me about it. And, of course, when they don’t say it to my face, there are still whispered conversations.
I wasn’t thinking so much about the larger social aspects of being different and people’s pity in my initial response but yeah, it’s pretty overwhelming to navigate all of that, so, again, just lots of thoughtfulness to help them insulate against the not so thoughtful people. And if you share some social circle, maybe helping to model for others. I am always astounded as I think back and realize that no one in my own grade all the way through elementary/high school ever said anything negative about my hands. All I can think is that, as a community, they all modelled for each other what was appropriate. But mostly, just keep being a good friend. ~lmc
We don’t have that specific special need, but know a little about how to help.
Still being present after the first wave of crisis hits is a biggie. It’s also amazingly lovely when a friend remembers where we are in the process of a test, appointment or treatment and they check in to see how we are – a call, VM, note, email. I have friends that have called to say they didn’t know what to say but loved us and wished we weren’t going through it all. Celebrate the birth as people have mentioned.
Practical things…gift cards for the resturants around the hospital, do the laundry (or take it to a fluff and fold) if you are close friends and they don’t feel strange about it (I got over letting people touch our dirty laundry quickly when I realized I couldn’t do it all), mow the lawn/weed if they don’t have a yard guy, when you provide food, do it in non-returnable containers. A friend of ours grocery shopped for us for a year, on the same day every week. It was one of the nicest things someone did. She insisted. She didn’t let me say no to her desire to do it. At the hospital especially, provide healthy snacks, in bags and containers you can write their name on (community family fridges), set up or tell them about caringbridge.com, or carepages.com – free sites for people going through medical situations so they can easily keep people informed of what is going on – all the children’s hospitals I know of have computers on every floor for families to use for this very thing.
Whatever you do, until you know they feel this way, please don’t tell them god chose them because they could handle it – some people find comfort in that but not everyone does.
I am actually a neuro pediatric nurse and most of my patients have spina bifida. Im not sure if your friends live near Atlanta, but I work at CHOA. Knowing they have your love and support will be wonderful. They will need extra patience with this sweet new baby and I am sure anything you do will be helpful.
Email me at amyschristopher@comcast.net if I can do anything to help
my god daughter was born with spina bifidia. her parents needed folks to treat them normally. they grieved their normal child during those long days in the nicu. after that they needed people to celebrate the birth of their beautiful child with them. they will be very tired, the baby will require round the clock medical care for a long time after he/she comes home, there will possible be more surgeries in the first year, in other words it will be tough, but still joyful. they will be told the very worst things to expect, this is good on many levels. jade could do so many things her parents were told she would never do that the things she couldn’t do weren’t such a big deal. your friends will need your support and love. they will need you to accept and love their baby, and treat it as if nothing is wrong. that part wont be hard at all!! as the child gets older, if paralysis is present there will be on going problems that will be ever more frightening and serious. i urge you to enter into this for the long haul, your friends are really going to need you. i’m sure the child will be just as loving, smart, witty and delightful as my jade! she was my heart and the joy of my life for 28 years, sadly we lost her three years ago. just be there, loving, open and accepting, that is what your friends are going to need!
IT sounds like you have the basics covered. Help with childcare, celebrate the new child as you would any child, be avaiable for emotional support…
Good luck to your friend
Don’t give the baby any gifts of clothing or toys that contain latex. Most people with SB either have, or eventually develop latex allergy which can be deadly. That includes clothing with elastic in the sleeves and pacifiers that are not silicone.
Do not give parenting advice to these parents. That’s the last thing they need. Do not be Miss Happy Positive and keep telling the family about the miracle child with SB who overcame all obstacles and that the child will be “just fine” etc…. Of course, needless to say, don’t give a doom and gloom outlook either.
When the child is a toddler he or she might appear mentally just fine, very outgoing and talkative. Do not start telling the family that the child is “fine” mentally or even gifted. This outgoing verbal personality is a part of the learning disorders that are manifest through auditory over-use. When you see a SB child like this remember that when he or she is in 3rd or 4th grade their academic world starts to fall apart.
Convincing the parents that the child is very bright and has escaped learning problems is not good. As the learning problems manifest the parents are usually devastated and since the child presented as bright so early the child is blamed.
Do not say things like “God knew you were just the parents for this child” or that God picks special parents. Give me a break. Lots of these poor kids are mistreated or abandoned to the foster system. God does not pick special parents to punish with a SB child nor does he pick specially equipped parents. Some suffer divorce and breakdowns.
Sincerely,
Lin
Hmmm, to Lin- the outcome of SB is as varied as the kids who have it. Some people have virtually no long term effects except a scar on their backs. There is some celebrity, Oh, I want to say John Cougar Mellencamp, who was born with spina bifida. I dated a guy with SB who had a L7 SCI and a latex allergy but who was a Ph.D. and had no other mental issues. I have taken care of and taught kids that were full quadriplegics with significant cognitive delays.
When people start saying stuff like, “if he talks a lot that means he has an outgoing verbal personality that is a part of the learning disability that results from auditory overload. SB kids are kids. They are individuals and will have their issues and problems and gifts that come up as they go along. And, guess what? They ARE fine.
Another Hmmm to Lin- Jade was a personable child, who was very smart and a good student. She had a Master’s degree and taught English as a second language. She was also an on-call translator. Intelligence was never a problem! Latex allergy and ever recurring soft tissue infections were. The problems of SB children are as varied as the children themselves. and, there are days when the parents need to be assured that they are strong enough to pull it all off. because there are days when they truly think they just can’t go on.
[...] The terrible tragedies in Myanmar and China are weighing heavily on my heart. If they weren’t enough, we have two medical crises that are hitting close to home. My uncle has had a heart valve condition most of his life. He recently had what should have been a pretty low-risk surgery, but it was botched somehow and both his heart and kidneys were severely damaged. Just this week, he was admitted to a new hospital far from home and 90% of his heart was removed. He is currently surviving with a completely artifici*al heart. My uncle has always been one of the most fit and athletic people in our family. He is only about 45 years old and his youngest son is 6 years old. It is difficult to imagine him being so ill. In the best case scenario, he will be living in the hospital for the next 3-6 months. They are hoping that he can survive with the art*ificial heart long enough to make it onto the heart transplant list. We also have friends who are facing a medical crisis with their baby girl. (I mentioned them a while back.) The last few months have been a rollercoaster for them. Right now, they are facing a potentially life-saving surgery, which may also be very risky. They are currently taking turns sleeping and living at the hospital, while the other takes care of their older son. I can’t begin to imagine how difficult it must be. [...]