My Unborn Baby Has Down Syndrome: What Do I Do?

Down syndrome is rare congenital disorder that affects one in 800 babies. Even to date, scientists have a hard time what exactly causes this genetic mutation. If you’re over the age of 35 and you’re currently pregnant, you may be worried if your baby may be at risk of having Down syndrome. If you haven’t been diagnosed yet, here’s what you need to know. What Is Down Syndrome Down syndrome is a congenital disorder caused by an extra copy of chromosome 21, the condition is marked by physical and mental disability. The most apparent symptoms being facial deformities, a short stature and poor muscle tone. According to Mayo Clinic, Down syndrome isn't inherited. It's caused by a mistake in cell division during early development of the foetus. Stanford Medicine Children's Health states that women above the age of 35 are more likely to give birth to Down syndrome babies if they get pregnant. Down syndrome babies can suffer from a variety of disorders and health issues. While many are able to live well beyond their golden years (50+), they often have to contend with cardiac (heart-related) problems, respiratory infections, vision and hearing loss, learning difficulty, and other disabilities that can make life very difficult for them, even as adults. How Do Babies Get Diagnosed with Down Syndrome It’s important for pregnant mums to always go for their doctor’s appointments. This is so the doctors can detect any potential problems early on in the pregnancy—even though in the case of Down syndrome, unfortunately, there is not much that can be done. Down Syndrome babies are usually diagnosed accidentally through regular prenatal screenings like blood tests. Protein markers in the mother’s blood are able to tell if the unborn foetus has Down syndrome. This is usually when the doctor schedules more thorough tests to confirm the diagnosis. Amniocentesis and ultrasounds are usually the most common prenatal tests performed for Down syndrome. Amniocentesis is performed using a thin needle that is passed through the mother’s abdomen. A small sample of amniotic fluid is then taken to be tested. When Are Babies Screened for Down Syndrome Genetic markers of Down syndrome will typically already present themselves in the mother’s blood within the first trimester. Before the baby is even born. So, tests and screenings can happen as early as 10 weeks. Blood tests and ultrasounds are performed between 10 to 13 weeks of pregnancy. Chorionic villus sampling (CVS) is also performed during this time. This procedure involves a doctor harvesting foetal chromosomes from the mother’s placenta to look for abnormalities. Amniocentesis is usually performed much later between 15 to 20 weeks of pregnancy. What Can Mothers Do When They Get the Diagnosis Unfortunately, there is not much you can do once the diagnosis is confirmed. The best you can do is educate yourself as much as you can. Your doctor will also answer any questions you may have. This will help you decide whether you are able to raise the baby. However, it’s important to remember not to let any third party's personal opinions influence your own decision-making. Do what feels right for you and your spouse. What Should I Do if I Want to Keep the Baby? Continue educating yourself, but ditch the science sites and go to blogs, social media accounts and support groups. You may also read up on shared personal experiences of mums and dads with Down syndrome babies. Their joys and struggles, their triumphs and failures. One thing to note is that, if you're not insured, the follow-up tests and screenings will eventually pile up more medical debt in your name. Your baby will also have to stay longer in the hospital after childbirth for observation, which will cost more money. These are just the tip of the iceberg. You will need to do your own research to see if you are actually equipped, mentally, emotionally and yes, financially, to raise a special needs child. The initial postpartum medical bills will just be the beginning. There will be plenty of doctor’s appointments and therapy sessions for your Down syndrome baby down the line. What Are My Options if I Don’t Want the Baby? You can always carry the baby to full term and put them up for adoption. Then, they can be given to parents who are better equipped to raise a special needs child. Or perhaps even prefer to do so. This will be better than raising the baby in a home where they may feel unloved or unwanted. Another less desirable option, and one riddled with red tape, is abortion. Now, abortion in Malaysia is a tricky subject as it’s not illegal per se, just heavily restricted. A pregnancy can only be terminated if it directly threatens the mother’s mental and physical wellbeing. This is quite a vague clause for such an important law. And it is enforced for both Muslims and non-Muslims. If you and the baby are otherwise healthy, you’ll be hard-pressed to find a doctor willing or brave enough to sign-off on the abortion, even if it’s due to mental health reasons. This is as the consequences, if found guilty, is not only enforced on the mother, but also the medical professionals who approved and performed the procedure. Even now there are no reliable sources that will tell us conclusively if Down syndrome pregnancies can or have ever been terminated in Malaysia. Making the Right Choice A woman’s reproductive rights are still an issue of debate in Malaysia. Especially when it comes to abortion. When talking about ethics, many voices remain divisive. Ending a life before its born, or consigning an innocent child to a lifetime of suffering? Although in the case of Malaysian women, this moral dilemma may be out of our hands entirely. Or at least for the time being. Now, we won’t sugar-coat it and say raising a special needs child is easy. Hence, this is a discussion best left to you and your spouse. Just know that no matter your decision, it’s the best one for you and your family. Disclaimer: The information provided in this article is for informational purposes only and should not be considered as medical advice from Motherhood. For any health-related concerns, it is advisable to consult with a qualified healthcare professional or medical practitioner. For more insightful stories and fun recipes, stay tuned to Motherhood Story!

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