Ok. It wasnâ€™t supposed to go like this. You were supposed to go in, find out the babyâ€™s sex, and thenÂ buy the pink or blue supplies for your reveal party. But instead, the ultrasound technician went quiet.Â Colleagues were brought in to consult. A diagnosis was given â€“ a fetal abnormality. Something is wrong.Â So what do you do now?
If youâ€™re religious, this may be the right time to send up a prayer.
This is very important. While obstetricians,Â ultrasound techs and maternal fetal medicine specialists are highly skilled at reading that grey blob onÂ the screen and seeing any abnormalities, they are experts in pregnancy only. They do not know muchÂ more than you do about the specifics of the diagnosis, and their information often comes from aÂ paragraph or two in a general medicine textbook back when they were a student.
This is not a dig at these medical professionals. They are experts in their own field, but they canâ€™tÂ possibly be experts in every area of medicine.Â Ask to consult with a cardiologist, a paediatric neurosurgeon, an orthopedic surgeon â€“ whoever dealsÂ with actual babies with this condition after they are born, at a Childrenâ€™s Hospital if possible. They areÂ the ones with the most up-to-date information and can give you a realistic prognosis.
I know you want to become an expert on this. You want to understand all of the medical terms theyÂ gave you. You want ANSWERS. Google is not your friend here. You will only find more cold medicalÂ definitions and worst-case scenarios to flame your fear.
Instead, find a support group. Ok. Fine, you might have to use Google for this. Facebook is a treasureÂ trove of support groups, and even the Baby Center boards can be useful if you go to diagnosis-specificÂ ones (they have the added bonus of anonymity if youâ€™re not ready to reveal yourself yet).Â Reach out to these support groups. Ask them the questions you have. Ask about what life is like withÂ this diagnosis, or parenting a child with this kind of fetal abnormality. There tends to be a wide range of experiencesÂ within the groups, and if you scroll through the older posts, you can probably get a pretty clear idea ofÂ what youâ€™re facing, for better or for worse.
The diagnosing doctors can sometimes be overly negative in their presentation of the diagnosis. This isÂ why speaking to specialists and support groups is important, so you can make an informed opinion forÂ yourself. There are some conditions in which the survival rate beyond a few days from birth isÂ extremely low and most babies are stillborn, or from which the baby would suffer a great deal.Â There are other conditions where the doctors give outdated information and in reality children thrive,Â despite the extra challenges they may face.
This is a very personal decision to make, but if it is an informed choice, you will be at peace with it.
Donâ€™t get caught up in the What Ifs. No one ever knows exactly what their future holds. Youâ€™ve had aÂ foggy glimpse of what is to come, but not even the best specialist can predict exactly what will happenÂ for your baby.
This is not going to be an easy time. Many people I know who have children who were diagnosed withÂ a fetal abnormality say that pregnancy was the worst part, because it was all speculation and theÂ unknown. Though it may not be all sunshine and lollipops after birth, it feels easier to bear becauseÂ now you have a beautiful little face to look at, and you know that you werenâ€™t just carrying AÂ Diagnosis, but rather your child, who happens to have a medical condition.
Share only what you feel comfortable with. Not everyone needs to know all the details. Be prepared for potentially hurtful comments.Â You may find some people have a strong opinion on whether or not you should continue yourÂ pregnancy, and they are not always respectful of your feelings while sharing that opinion. Some peopleÂ donâ€™t know how to handle news like this, and may either stay silent, or may say something insensitive.
You may want to consider distancing yourself from anyone who is unsupportive until either theyÂ change their behavior, or you develop a thick skin and can ignore them.
It is hard when lifeÂ takes these unexpected turns, and your feelings are completely valid. Talk through them with someoneÂ you trust, or a professional counsellor.Â And try to understand that your partner may deal with this in a completely different way. Men oftenÂ find it hard to bond with their unborn children, and when there is a diagnosis that they canâ€™t fix, it canÂ be especially difficult. Keep up the conversations.Â On our support groups, I often see people suggesting to newly diagnosed parents that they choose aÂ name, or if that is too contentious, a nickname (popular options include Jellybean, Peanut or Bump).Â This can help you to see past the diagnosis, and can improve bonding.
Life is certainly different now than I had imagined before our D-Day, and receiving the news that our baby had a fetal abnormality. We have a lot more doctorsâ€™Â appointments for this little one than we ever did with her older sister (though thankfully, for us mostÂ are just checkups).
We have some different daily routines from most families, and it can be hard toÂ watch her struggle to hit gross-motor developmental milestones months behind her typical peers â€“ butÂ at the same time, we were originally told sheâ€™d likely never hit any of these milestones, so each one sheÂ does is a huge win, even if itâ€™s late.
But if I had known just how happy, silly, cuddly and loving my little one was going to be, I wouldnâ€™t have wasted one moment of the pregnancy worried about all the What Ifs. Because even though she has Spina Bifida, she isnâ€™t Spina Bifida. Sheâ€™s my little lovebug, so much more than any diagnosis.