Challenges of parenting a child with Down syndrome

My son had to be kept at the hospital for a month after being born because he had heart condition and kidney problems.

In the first month he wore an oxygen mask due to his heart condition. I had to feed him every two hours and constantly watch the oxygen saturation monitor. I prayed to the Almighty and asked Him to help my son breathe. Eventually the doctor told us that we could take him home, but we were very nervous and wondered how he would cope without an oxygen mask. For months my husband and I listened to his heart just to make sure that he was still breathing.

Given his kidney problems my son also used to develop a fever and we had to often take him to the hospital as his chances of getting a urinary tract infection (UTI) were very high. Since UTI could cause more damage to his kidneys he needed special medical attention. Despite the medication he would get UTI very frequently and had to be admitted to the hospital very often. He often needed an IV and sometimes even a catheter to get cured. He had to undergo two procedures to fix his kidney problems but he is still not fully cured. We continue to take him for regular check-ups and as part of his daily routine we have to make sure that he empties his bladder every few hours.

Amongst other medical issues, he also has acid reflux and weight issues therefore he has to take his meals and medication on time. It is becoming increasingly difficult to balance both the issues. On the one hand less food gives him acidity, while on the other, his weight needs to be balanced due to his kidney issues.

Sleep apnea is another condition that my son suffers from. Although he had his tonsil and adenoid removed, the problem still exists. He also has low muscle tone, large tongue and is overweight. My husband and I take turns to monitor and help him get into a comfortable position so that he can breathe normally. Some nights he wakes up every half an hour. Unfortunately, it is not easy to use the CPAP machine on children, besides they don’t even keep it on.

After caring for a child with so many medical challenges, it is my understanding that children with Down syndrome are not only cognitively delayed but their physical condition prevents surgery from being fully successful on them. The body of a normal child and that of a child with Down syndrome might react differently to the same surgical procedure.

It is not easy to handle all the medical issues of a child with Down syndrome as they are all related and seem to return in a cyclical pattern. However, with patience, love and care one can deal with the day to day challenges involved in caring for a child with Down syndrome. The priceless reward is the unconditional love you get from your child!

It is my belief that no matter how difficult it is, with love and care, your child will overcome every hurdle in life.

Syeda

rumnaz2000@yahoo.com

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