Saturday, December 8, 2012

When You're Expecting the Unthinkable

Having a special needs child can be a lonely experience. For all the talk we get about "preparing for the birth of the baby", nothing ever really can prepare you for having a baby that doesn't quite fit the mold. There really just isn't a lot of talk about actually birthing a special needs baby.

Often doctors and parents equate "special needs" with "automatic c-section", but the reality is that vaginal births and sometimes even an out-of-hospital birth can be great options depending on each mother and baby's particular situation. So why look at your options?

Recovery- It's often easier to recover from a vaginal birth than a c-section. If your baby is going to need surgery or spend time in a specialized NICU, being able to get up and get around easily is a huge benefit. Many small hospital have NICU's for babies who need extra care, but aren't critical or don't require surgery and these often have accommodations for parents making recovery a bit easier even if you do have a c-section. But if your baby is going to be at a large children's hospital- especially one that is several hours away from you- you will most likely have to figure out your own living situation. We only slept about five hours a night and had to commute to see our son and for a while I was solely pumping for him. I was really glad that I wasn't recovering from major surgery along with everything else. And we considered ourselves lucky because we lived within 30-45 minute drive from the hospital. A lot of other parents there were from out-of-state! A vaginal birth also means that you have less risk for complications. A girl I lived next door growing up also had a baby with myelomeningocele. She had a c-section which was complicated by uterine infection. Ouch. Something else I'm glad I didn't have to deal with during the whole thing. Now that I have a toddler to take care of too, if I were to do it all over again, I personally would be even more adamant about avoiding a c-section if it all possible.

Bonding- One of the most devastating things that can happen to expecting parents is to find out that the baby isn't going to live long. With certain birth defects, the baby may not live more than a few hours. For moms who are able to go natural, this might be a consideration so that they can experience that precious time without feeling "foggy".

Privacy- While babies who need surgery and have a good prognosis may be better off at a hospital, for babies who have a birth defect that is incompatible with life, a home birth may be an option provided (as is the case with any birth) that the midwife is qualified that the pregnancy is otherwise uncomplicated. Though it is rare because home birth is so uncommon in America, there are cases of couples who have birthed a baby with a fatal congenital abnormality at home. I did meet a midwife once who had attended a couple who found out on the 20 week ultrasound that their baby didn't have any kidneys and would only live for a few hours. Since nothing could be done- even in a hospital setting- they decided to go forward with their plan to have a home birth and the midwife was fine with that. They were able to hold their baby girl right after birth and all through the couple of hours she lived. She died peacefully in her parents' arms without any interruptions- just as the parents wished. I have heard of cases of babies with severe Edward's syndrome (involving defects that were incompatible with life) who were born and peacefully died at home. This is obviously a very personal decision, but for some families this has been their choice of handling an extremely difficult situation.

Stress reduction- I'm a big believer that moms need to give birth wherever they feel comfortable. Obviously, if your baby is going to be in the NICU or need surgery, this may not be an option. But again, if the baby has a fatal congenital abnormality, the setting may not make much difference in the actual outcome, but can be a big factor in the experience for a grieving family. I think that especially in a situation like this, parents need to decide what setting will help them feel safest- whatever that is. One option that more and more parents are turning to lately is the pre-natal hospice. Sometimes these are actual facilities where parents who are expecting a baby that won't live long can go to receive care and give birth in a supportive environment. Sometimes it's a network of resources to help parents of special babies to cope and support them in making the most of their baby's short life. I think it's wonderful that we live in a day when these sorts of options are available.

One of the biggest recommendations I can give after having given birth to a special needs child is that parents really do their own research. Sometimes, the recommendation for a c-section is made on out-dated ideas that aren't supported by current research. In the case of myelomeningocele, for example, doctors used to think that a vaginal birth would harm the lesion on the baby's back and destroy their chances of having any leg mobility. But even with a c-section the lesion can still be damaged and research shows no advantage in walking ability for babies who were born via c-section. More doctors are starting to leave the decision to the mother, but many health care professionals have been very slow to accept this. While the input of doctors and nurses can be helpful, at the end of the day, we as parents are the ones who have to live with the consequences of the decisions. Whatever your circumstances are, you are your own best advocate for your family, and the more you know, the better you can take care of yourself and your child!

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