When Your Baby Has a Birth Defect
10 tips for handling hard news and preparing for a happier future
I will never forget my OB asking me more than once if my surgical resident husband would be coming with me to my 20-week ultrasound. (She noticed that my son Slim had a cleft lip at my 14-week check but hadn't confirmed it.) And I remember them conversing in "doctor speak" while I sat in stunned silence after hearing the news that my baby would be born with a bilateral cleft lip and palate.
According to the Centers for Disease Control and Prevention (CDC), about 3 percent of babies are born with some kind of birth defect. The most common ones are heart defects, cleft lip and palate, Down syndrome, and spina bifida.
I doubt anyone who dreams of bringing a darling baby into the world thinks that their baby will be in that 3 percent. I know I didn't. Advanced ultrasounds and earlier diagnoses mean there are few surprises at birth these days, which gives parents time to prepare. But any time you hear that news, it can still be devastating.
Here are my tips for parents who learn their baby will be born with a birth defect:
Let yourself cry. It's ok to feel sad, angry, and cheated. Feel the grief and take time for it. But then move ahead. I cried for two days about Slim, but then I decided it wasn't going to do my family (including Slim) any good if I was miserable and crying all the time.
Take a deep breath. Yes, it's happening. Your baby is in the 3 percent, and it can be scary. When we found out about Slim, I knew we had a hard road ahead of us, but I also knew we had the strength to manage whatever issues his birth defect would cause.
Resist the urge to Google the condition immediately. No good can come of this. When you do research online, you're taking your chances with the accuracy of the information, and it doesn't always come out in your favor. Your doctor will have information specific to your baby's condition and can answer any questions you have without giving you unnecessary information.
See any specialists and have any extra tests your doctor recommends. If the procedures align with your ethical and religious beliefs and your insurance covers them, why not? The more you learn about your baby's condition ahead of time, the safer he – and you – will be at his birth.
Plus, it lessens the possibility of additional surprises and helps you connect with the specialists your baby may need. For example, some babies with cleft lip and palate issues also have heart defects, so my doctor sent me to a pediatric cardiologist who did an ultrasound of Slim's heart before he was born. Thankfully it was fine, but the cardiologist was on call during his birth just in case.
Look at pictures and read information when you are ready. Don't force information on yourself before you are ready. You have up to 20 more weeks to let the idea of a special child sink in. My husband found a wonderful website, Wide Smiles, which has pictures of every type of cleft lip and palate. He found a little boy who looked exactly as Slim would look, and he said to me, "When you are ready to see it, I have a picture to show you." When the time felt right, I looked at it. And I actually felt relief.
Communicate openly with your partner. Talk about how you both feel, what your expectations are, and what you need from each other. Then make a pact to keep the line of communication open. Having a special needs child adds another level of stress to a relationship. You need to know this. You need to work together to care for your child.
Educate and prepare your family and friends. Just because people have heard about some of these birth defects doesn't mean they know exactly what they entail. I was really surprised when many people had no idea what cleft lip and palate is. As with any newborn, you are going to need help and want breaks. Make sure there are some people you can turn to who will know how to care for your baby's special needs. Be prepared to train your baby's caregivers.
Know that some people will be uncomfortable. Just as not everyone is comfortable holding a newborn, not everyone will be comfortable being around a child with special needs. I had a friend who was visibly uncomfortable every time she saw Slim before his lip was repaired. I understood and didn't judge her for it. Just keep in mind that some people might drift away. Regardless of a child's physical condition, sometimes just having a child has a way of weeding people out of your life.
Understand that this baby will make you a better parent and a better person. Despite all the challenges this child will bring into your life and all the times you will wish for things to be different, this child is wonderful and special and will make you see the world in a new light. And even if you think there is no way you can handle it all, you will do it simply because you love your child. And that will be enough.
Accept the help that is offered. Social workers will visit you in the hospital when your baby is born. They will give you all sorts of forms and applications for special assistance. Tell them if this feels overwhelming and ask for help organizing the information. Many states have wonderful early intervention programs that are free and in-home. Find out what your child qualifies for and what other assistance you can receive. Then take the help. It's ok.
With information, support, knowledge, and unconditional love on your side, you will be able to care for your baby's unique needs.
This article originally ran on lifewiththefrog and is reprinted here with permission from the author.