pregnant woman on diagnosis day getting news of fetal abnormality
Health Medical Scary Shit

Scary Shit Series: Surviving Diagnosis Day

By Deirdre Madden

Ok. It wasn’t supposed to go like this. You were supposed to go in, find out the baby’s sex, and then buy the pink or blue supplies for your reveal party. But instead, the ultrasound technician went quiet. Colleagues were brought in to consult. A diagnosis was given – a fetal abnormality. Something is wrong. So what do you do now?

Step One: Remember to breathe.

If you’re religious, this may be the right time to send up a prayer.

Step Two: Ask for a consultation with a specialist.

This is very important. While obstetricians, ultrasound techs and maternal fetal medicine specialists are highly skilled at reading that grey blob on the screen and seeing any abnormalities, they are experts in pregnancy only. They do not know much more than you do about the specifics of the diagnosis, and their information often comes from a 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 can’t possibly be experts in every area of medicine. Ask to consult with a cardiologist, a pediatric neurosurgeon, an orthopedic surgeon – whoever deals with actual babies with this condition after they are born, at a Children’s Hospital if possible. They are the ones with the most up-to-date information and can give you a realistic prognosis.

Step Three: Step away from the Google-machine!

I know you want to become an expert on this. You want to understand all of the medical terms they gave you. You want ANSWERS. Google is not your friend here. You will only find more cold medical 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 treasure trove of support groups, and even the Baby Center boards can be useful if you go to diagnosis-specific ones (they have the added bonus of anonymity if you’re not ready to reveal yourself yet).

Reach out to these support groups. Ask them the questions you have. Ask about what life is like with this diagnosis or parenting a child with this kind of fetal abnormality.

There tends to be a wide range of experiences within the groups, and if you scroll through the older posts, you can probably get a pretty clear idea of what you’re facing, for better or worse.

Step Four: Now you can consider your options.

The diagnosing doctors can sometimes be overly negative in their presentation of the diagnosis.

This is why speaking to specialists and support groups is important, so you can make an informed opinion for yourself. There are some conditions in which the survival rate beyond a few days from birth is extremely low and most babies are stillborn, or from which the baby would suffer a great deal.

There are other conditions where the doctors give outdated information and in reality children thrive, 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.

Step 5: If you have chosen to continue the pregnancy, then try to cherish it.

Don’t get caught up in the What Ifs. No one ever knows exactly what their future holds. You’ve had a foggy glimpse of what is to come, but not even the best specialist can predict exactly what will happen for your baby.

This is not going to be an easy time. Many people I know who have children who were diagnosed with a fetal abnormality say that pregnancy was the worst part because it was all speculation and the unknown.

Though it may not be all sunshine and lollipops after birth, it feels easier to bear because now you have a beautiful little face to look at, and you know that you weren’t just carrying A Diagnosis, but rather your child, who happens to have a medical condition.

Step 6: Consider carefully how (or if) you want to share the news with friends and family.

Share only what you feel comfortable with.

Not everyone needs to know all the details. Be prepared for potentially hurtful comments. You may find some people have a strong opinion on whether or not you should continue your pregnancy, and they are not always respectful of your feelings while sharing that opinion. Some people don’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 they change their behavior or you develop a thick skin and can ignore them.

Step 8: Allow yourself the time to grieve the loss of your dream of your ideal baby, who probably also slept through the night, fed like a champ, and at age 2 never threw a single tantrum.

It is hard when life takes these unexpected turns, and your feelings are completely valid. Talk through them with someone you trust, or a professional counsellor.

And try to understand that your partner may deal with this in a completely different way. Men often find it hard to bond with their unborn children, and when there is a diagnosis that they can’t fix, it can be especially difficult.

Keep up the conversations. On our support groups, I often see people suggesting to newly diagnosed parents that they choose a name, or if that is too contentious, a nickname (popular options include Jellybean, Peanut or Bump). This can help you to see past the diagnosis and can improve bonding.

My daughter was diagnosed with Spina Bifida Myleomeningocele, a neural tube defect, at our 18 week ultrasound.

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 doctors’ appointments for this little one than we ever did with her older sister (though thankfully, for us most are just checkups).

We have some different daily routines from most families, and it can be hard to watch her struggle to hit gross-motor developmental milestones months behind her typical peers – but at the same time, we were originally told she’d likely never hit any of these milestones, so each one she does is a huge win, even if it’s late.

But if I had known just how happy, silly, cuddly and loving my little one was going to be, I wouldn’t have wasted one moment of the pregnancy worried about all the What Ifs. Because even though she has Spina Bifida, she isn’t Spina Bifida. She’s my little lovebug, so much more than any diagnosis.

Our next recos: Scary Shit Series: Congenital Heart Defects

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