Welcoming a baby with Down’s Syndrome can cause angst and concern for expectant parents. For many, long- harboured visions of dance classes and football practice, birthday rituals and family fun days are suddenly eclipsed by mounting worries of impending medical treatments and 24x7 care. In India, about 1 in 830 live babies is affected by Down’s Syndrome.
The trouble is, it isn’t talked about nearly as much as it should be. Down’s Syndrome isn’t a life-threatening disease. In fact, with the advent of modern medical infrastructure in the last few years, the average life expectancy for Down’s Syndrome has risen to 55 years. Before we go on to tell you how you can welcome a baby affected with Down’s Syndrome, let’s begin with the basics.
Down’s Syndrome is a genetic condition that is caused by a supply of surplus genetic material. The condition gives rise to developmental delays, varying degrees of learning disabilities, almond-shaped eyes and low muscle mass during infancy. The disorder is also known to be a precursor to cardiac problems, leukaemia, digestive disorders and the premature onset of Alzheimer’s disease, amongst other potential health problems. The dawn of superior screening technology has enabled Down’s Syndrome to be detected in utero, although there are no curative measures that can be taken either before or after birth in this regard.
Finding out that your baby has Down’s Syndrome can be difficult to deal with. You may ride a giant emotional wave that will likely involve denial, disappointment, guilt and self-pity. You may feel like your plans for your family have taken a colossal turn and the future you once imagined has been marred beyond measure. But through these days, remember this: you are not on this journey alone. Show emotion. Speak to your partner about your feelings; it helps to discuss thoughts and concerns with someone who is on the same path as you are.
If you already have a child, speak to them about what to expect once the baby arrives and how you’re in this together as a family. Seek information from your doctor about medical support you should seek for your baby and explore support groups in your vicinity. It’s uplifting to be kindred in spirit with other mothers who are sailing the same journey you are.
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You’ll find that parenting a baby with Down’s Syndrome has you pondering the same concerns as you would have, had you not received a diagnosis. Still, there are a few extra points you must remember as a parent of a Down’s Syndrome baby.
Babies with Down’s Syndrome tend to have ungainly control over their tongues, primarily due to muscle enlargement and poor muscle tone. As a result, it is possible that the tongue may roll back into the throat causing obstructive sleep apnea. Close to half of all children with Down’s Syndrome suffer from this condition, which can arrest breathing sporadically for short spans of time. Although sleep apnea isn’t as common in infants as it is in older children, it’s wise to remain vigilant. Look for possible clues like rasping sounds, disturbed sleep and grogginess during the day.
Down’s Syndrome manifests in varying degrees in babies, so pigeonholing milestones for Down’s babies become redundant. Nonetheless, be thorough with your baby’s medical checkups in the first few years to watch for anomalies. Based on an initial evaluation, paediatricians on Cloudnine will create a comprehensive learning programme for your child using physical therapy, speech and language therapy, and occupational therapy tools. With early intervention, a baby with Down’s Syndrome will likely reach the same mental and physical milestones as other babies, although timelines may be slightly delayed.
About half of all Down’s babies are also diagnosed with a heart defect. On Cloudnine, our prenatal scans are capable of identifying the status of your baby’s developing heart early on, so that you can have a medical treatment plan ready well before your baby’s birth.
Down’s Syndrome can cause ear canals to be narrower than normal, augmenting the chances of ear infections. It’s important to have your baby’s hearing tested in the first few days after you deliver, and then every six months until your baby turns 3. The hearing test on Cloudnine is an elementary screening test that assesses your baby’s aural faculty.
Over 50% of the Down’s population has impaired eyesight. These visual problems span a vast spectrum, ranging from mild to severe. Visit an ophthalmologist on Cloudnine to evaluate your child’s eyesight.
Gastrointestinal disorders are common in children with Down’s Syndrome. Apart from risk of obstructions in the small intestines, babies are also susceptible to conditions such as an inadequately formed windpipe and an underdeveloped oesophagus. With surgery, the effects of these conditions can be alleviated.
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At this stage, as you contemplate your future, remind yourself that it is still as bright and beautiful as ever. Know that it still holds those dance classes and birthday rituals and family fun days that you dreamt of. It’s what you make of your future that will shape your child’s path. Look up, always.