No one wants to talk about it, but sadly bad things happen during pregnancy. Sometimes babies die and sometimes babies are not born perfect with "10 little fingers and 10 little toes." Since no one talks about these things, going through a difficult pregnancy, when you know your child is going to be born with a birth defect, can be very isolating.
Each year about 120,000 babies are born with a defect. The most common are: heart (a common result of prematurity), cleft lip/palate, Down Syndrome, Spina bifida (when the spinal cord develops incorrectly, leaving it exposed), arm and leg, gastrointestinal, and eye defects. They are the leading cause of death of babies within the first year of life.
There are a wide range of defects, defined as abnormal structure, function, or body chemistry, which lead to death or physical/mental disabilities. Birth defects are caused by genetics (chromosomal problems or gene mutations) or environmental factors (such as exposure to certain chemicals, infections, drugs - prescription as well as illegal - or alcohol). Unfortunately, for those wondering "Why me?" the majority of the time there are no known reasons why this happened.
Here are some tips to help you cope in this situation:
1. If you're struggling to get answers from your doctor; get a second opinion. They should be there for you, to explain what to expect during and after pregnancy, as well as to provide support during this difficult time. If your doctor isn't meeting your needs, move on. (Yes- I'm saying fire him!)
2. Don't rush to make decisions, especially termination. (I've been there.) If your docs are discussing, even advocating for termination, take/demand time to consider your options. (See point #1 about getting another opinion, or three.) This is a decision that can only be made by you and your partner. Whatever decision you make is yours and yours alone. Make it with your head AND your heart.
3. It's OK to be upset, to cry, to even morn the loss of your dream of having a perfect pregnancy and baby. Go ahead...get upset, yell, cry and freak out. Get it all out of your system. Then move on so you can focus on staying positive and hopeful.
4. Let go of any guilt. Do NOT let it eat you up inside. Stress and guilt will not help you or the baby growing inside!
5. Educate yourself so you understand what the range of your child's disabilities and special needs will be. The spectrum is huge. Be aware of your options, since many birth defects can now be treated with surgery, dietary adjustments, cognitive or physical therapy.
6. Seek support from others who've been there. There are various foundations which can provide this much needed assistance. Talking to other moms can ease concerns and help you to prepare for the future. A few options are:
- The Fetal Hope Foundation. They provide support, education, research funding and
- Birth Defects Research for Children, Inc., which offers information, parent buddies (they match you up to other families who have children with the same birth defects as your child) and support groups.
- Sideline National High Risk Pregnancy Support Network. This non-profit provides international support for women and families experiencing complicated pregnancies and premature birth. They will match you up with a volunteer who has experienced the same or similar situation. This "mom-buddy" will be there to provide support throughout your pregnancy.
7. All this will be overwhelming: educating yourself on all the medical information, preparing for the possibility of a special needs child, even the death of your baby, managing fear, stress, depression, isolation, sadness, loneliness...the list is endless. The most important advice I have is, YOU MUST TRY TO ENJOY YOUR PREGNANCY. You deserve the right to pull the little snippets of joy that you can from this experience, from feeling those little kicks or hiccups to watching your body change and grow. This may seem like an odd request, but trust me, I've been there and I've regretted not taking any time to enjoy the wonders of pregnancy when we were unsure of any future for our unborn baby.
Kelly Whitehead is a scientist-mom who lost a son at 23 weeks, then went on to have two high-risk pregnancies to have her children today. During this time, in which she struggled to make medical decisions and manage her feelings, she realized there were no books that covered what she needed - so she wrote one herself in order to help others (www.hrpwhyme.com). She is a spokesperson for Sidelines and a birth doula. Her passion is to help families through the journey to reach parenthood.
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