Being pregnant is quite an overwhelming experience in itself, let alone being told your baby will have a disability and you have to sit tight for however many months are left to find out the extent of that disability and what it would mean for you and your family. Change is never easy and the unknown is an even scarier concept to digest, so I have put together a few tips using my experience to help any parents who are feeling anxious after they have made the decision to keep their baby.
Take your time with your emotions
It is totally normal to feel over emotional and want to hide those emotions rather than expressing them to family and friends. I had difficulties sharing my feelings with the closest people to me because I just felt nobody could possibly understand what I am going through. The more I practiced opening up and even having a good old cry at times the better I felt whether the person understood or not. Sometimes a loving listening ear helps to sizzle down all those racing thoughts and you might even get some good advice if you allow them to talk every now and again.
Speak to the right medical specialist
You are probably wondering who is ‘the right medical specialist’, well that would be the doctor who has a very good understanding of your baby’s condition post birth and medically cares for children with that disability. Many of the doctors you meet while pregnant are specialists in caring for your baby whilst they are in the womb and possibly during the delivery process. They are informative, but their speciality area stops in the womb, so unfortunately they have very little experience with your baby’s post birth developmental stages. During your appointments with the fetal medicine team you should request to meet with the doctor who they will be handing over your baby’s care to. Our ‘right medical specialist’ was a neurosurgeon who performed my baby’s first surgery two days after birth. I was able to meet with her at 22 weeks for what I would call a life changing conversation. I remember she quite confidently said that “children with this condition can live to lead a happy life with complications ,but none the less it can still be a rich and fulfilled happy life. I have seen it myself and see it every day in my job”. And that was the first time a doctor came even close to planting a seed of hope in my heart since receiving the prognosis.
Hunt down people who have been there, done it, bought the T-shirt
The best solution to illuminating those horrid negative thoughts about your baby’s condition that are most likely not true is to reach out to parents, social media groups and charities who you could express all your doubts and concerns to. Facebook groups are great for connecting with other parents who have children with the same or a similar disability to your baby and getting first hand information and advice on what to expect. Do not feel that you are invading their privacy when asking questions because remember they were once walking in your shoes and felt the same struggles you now feel. You will find quite often that parents will answer your questions before the words even fly out of your mouth.