It’s one of the worst prenatal scenarios parent-to-be’s may have to face – being told their baby will have complications or congenital issues (a disease or physical abnormality present from birth). Complications can range from a variation of normal (e.g. extra digit) to one that’s moderate but can be managed with medical care (e.g. club-foot, cleft lip/palate) to something that can range from mild to having the potential to completely change a family’s life (e.g. Down’s syndrome, spina bifida).
This article addresses some considerations for families that are expecting a baby with complications.
How severe will the Complications and Congenital Issues be?
With the testing and ultrasound schedule commonly recommended during pregnancy, surprises are uncommon. In most cases of complications, people are made aware before the baby is born.
Until the baby is born, it’s impossible to know for sure what the severity will be. It’s important to maintain hope and a connection with your baby. Dr. Sarah Buckley writes extensively on prenatal screening, which includes false positives (a screening or test result showing an issue when there isn’t one). In that case, a suspected problem is found to be non-existant or milder than expected.
I’ve seen several of my clients go through this terrible roller-coaster, waiting for news, expecting the worst, and then finding everything is normal on the next ultrasounds and at the birth. It’s hard for them to ever believe their baby is OK. When parents-to-be are in limbo like this, it can lessen their attachment with their unborn baby, even after further testing confirms all is well.
What do I need to be aware of?
As you learn about a condition, the list of risk factors can leave parents – especially the pregnant ones – feeling like they are to blame. Find a counsellor or other parents in the same situation to help you work through these feelings. In many cases, no one is actually to blame.
Another sad reality about having a baby with complications is that it can be very hard on the parents’ relationship. Knowing that ahead of time can allow you to find resources, strategies and counsellors to help.
Keep in mind:
- You can have a smart, beautiful, amazing baby that happens to have a congenital complication.
- Many humans far surpass the limits put on them by stats and well-meaning medical care providers. Don’t limit your child! Their environment and how they’re treated can really make a difference in how their potential plays out. (Of course, that’s true for most children.)
- Focus on your child’s strengths while also being aware of their circumstances.
- There are countless people living normal productive lives and accomplishing great things in spite of being told they’d never be able to do it…
- Healing and thriving happens in the community. Humans are not meant to fly solo.
- Almost all parents struggle with worry, exhaustion, uncertainty, feel the pain of their child when they’re unwell, are learning to navigate life with a baby, love their baby and will do anything for them, have hopes and dreams for their child. This is common to parenting no matter if your baby is healthy or not.
- Seek out support groups – in person or online. Social media can be a bit of a minefield and provides a much different experience than a setting where you connect with actual humans. It can be scary, especially for introverts, to join a group but most people are glad they did so.
- Find an excellent online resource or two – not 10!
- Good sites will describe the condition in clear, understandable and kind terms.
- Those sites will have a section directed at parents
- Links to articles and resources that resonate with you
- Look at images online, only from those vetted sites, so you’ll know what to expect
- Find out what the policy is at your birth-place regarding family bonding and skin-to-skin contact in case of known complications, and yours specifically.
- Learn about local resources from your medical community. Many places have an excellent team of social workers, occupational therapists, medical people, therapists, geneticists that can help you navigate.
- Find out about social and government resources. You may be eligible for grants, programs, respite plans, and all manner of assistance available for families that have extra challenges related to a child with complications. Sometimes they’re hard to find.
- Learn as much as you can about the complication:
- Best and worst-case scenario / mild to severe case
- Learn the language – technical terms, acceptable language
- What future treatments might your child need? When? Is treatment invasive or painful? Is it necessary?
- You have choices! What does the future hold for your child without treatment or by taking a different approach?
How can I manage my Baby’s health?
You will be your child’s best advocate and may have to become somewhat expert in their condition. Keep a binder or digital folder of every test-result, procedure, appointment. Also, have a section for resources. Do not assume every medical care provider you meet knows the full picture of the specifics of your child.
If necessary and if you’re able, look outside of your own geographical region for treatment options.
What words and terms should I use?
The way people talk about your baby can be unknowingly hurtful. It helps everyone if you address this with those close to you. Many people want to be helpful or at least respectful but don’t know how. They tend to either stay away or blunder through, possibly adding stress or misery to your situation.
Here are some suggestions you can share:
- Use language that puts the human first e.g. baby with Down’s Syndrome
- “Birth defect” is inappropriate. Terms that might feel better: Complication, congenital disability, variation of normal, congenital abnormality.
- A list of acceptable terms in general and for specific issues: https://www.ncbi.nlm.nih.gov/books/NBK64884/
Prepare a cheat-sheet for loved ones and those that will be in your child’s life.
- Unacceptable terms
- Acceptable terms
- What makes the condition better and worse
- Special treatment the child may need e.g. can’t digest a certain food, needs a special baby-carrier
- What can they do that’s normal? e.g holding the baby won’t hurt them
- What you need – how can they help? How can they normalize life?
- Welcome them to visit or participate in your child’s life
- Links with more information
- Success stories, anecdotes
Cochrane Review – https://www.cochrane.org/ the gold standard for reviewing and analysing medical research
Stanford Medicine https://med.stanford.edu/
Johns Hopkins Medicine https://www.hopkinsmedicine.org
Mayo Clinic https://www.mayoclinic.org/
Health Link British Columbia https://www.healthlinkbc.ca/
March of Dimes: https://www.marchofdimes.org/complications/ (trigger alert: great info but some harsh language)
I teach a variety of Child Birth Education classes and prenatal workshops online for people all over. I have been a birth doula since 2002, and have helped over 300 clients with their births and over 1000 through prenatal classes. Learn more about my birth doula services, and contact me with any questions you may have.