“For Kayleen, surprisingly, I didn’t do the Down Syndrome screening test when I was pregnant. For my first 2 children, I did it because the doctor said I should, and I just followed his instructions.”
“For Kayleen, I just felt that it was unnecessary, because all along my husband and I have felt that no matter what happens, we would never consider abortion, and still continue with the pregnancy. I don’t know how I would have responded if I had done the screening then, and found out the truth. Maybe ignorance was bliss!” says mum of 3, Mary Heng.
Mary’s youngest child Kayleen, 6, has Down Syndrome.
Pregnancy and delivery
Mary tells us, “I was pregnant with Kayleen when I was 34. The general notion is that those who get pregnant after 35 are at high risk for babies born with Down Syndrome. But, it’s not really true. I have so many friends who have children with Down Syndrome, who were even younger than me.”
“Our gynaecologist suspected that Kayleen had Down Syndrome when she did the detailed scan at 5 months. We didn’t do advanced tests because we knew we were going to keep the baby, no matter what.”
“After delivery, she had to be kept in the neonatal ICU and later that day the paediatrician informed us that they had to do a partial blood transfusion because her oxygen levels weren’t optimal. Her blood was also sent for genetic testing. We got the results after a week. It confirmed our worst fears.”
Dealing with the diagnosis
Mary continues, “One of the first things the paediatrician asked us to do was to get her heart checked because children with Down Syndrome usually have defects in their heart. The doctor found that she had a very small hole in her heart, but nothing was done because he hopes it will close on its own with time.”
“Then of course there were the breastfeeding and latching on problems which are usually faced by Down Syndrome children. They have very low muscle tone, so they are floppy and cannot latch on easily. I faced a lot of challenges with breastfeeding, we had to visit the lactation consultant a number of times.”
“The hardest bit was reining in the emotions. Although I was prepared to have a child with special needs, nothing beats hearing the actual diagnosis. The hope for a healthy child was gone, and I now had to live with the diagnosis for the rest of my life.”
“For the first week I would cry a lot for no reason, then later on I tried to read up on whatever information was available on Down Syndrome. Most of the information was negative. When my friends would come to visit, they wouldn’t know what to do or say, they just felt sorry for us.”
Raising a child with Down Syndrome in Singapore
Mary also tells us about the challenges of raising a child with Down Syndrome, “For parents of children with special needs, the first year is usually the most trying. There are so many hospital visits for medical issues, as well as for therapies.”
“We got connected to the Down Syndrome Association (Singapore), and we were referred to a paediatrician at KK Hopsital who specialises in Down Syndrome. We also started our therapies at the hospital itself. The aim of these therapies was basically to help Kayleen achieve her milestones. We started off with physiotherapy and initially we had to go there once every 3 weeks, later we had occupational therapy coming in as well.”
“The number of hospital visits increased, so that added to the stress. I took no-pay leave in the first year so it was slightly easy for me. The visits also added to the family expenditure, but doing therapies at the hospital subsidised the costs a lot.”
Mary and her husband Chee Young, who works in the civil service, have also been through many challenges with Kayleen, “She has been to the paediatric ICU 3 times! When she was 1.5 years old she caught pneumonia and almost died!”
“A year later she fell ill with pneumonia again! Doctors said it could be related to Down Syndrome, or because of her feeding and improper swallowing. She even needed a procedure called ECMO as a last resort. And 1.5 months later, she caught pneumonia again!”
“All 3 times she needed a ventilator to breathe, and the medical staff kept saying that she has such a strong fighting spirit. These hospital admissions also cost a lot of money, and expenses kept piling up later when she had to be hooked up to 24-hour oxygen, and needed a feeding tube.”
Kayleen is still prone to infections and has a higher chance of getting respiratory illnesses when compared to other children. “But people have been understanding when we tell them that she needs to stay away from sick people”, says Mary, who also has 2 other kids, Charlene, 12, and Lucas, 9.
Milestones and development
We enquire about Kayleen’s physical and speech development. Mary informs, “She started walking when she was 2 years old. Right now she understands our instructions, and what people say, and can make out what’s going on on TV. There is speech delay, but she can speak a maximum of 6 words in a sentence. And she can say a series of sentences in one go.”
Kayleen continues to go for her therapies- occupational therapy, physiotherapy, speech and feeding therapy. She still has feeding issues, though she can feed by mouth now, and does not need a tube. She can however only take in purees and semi solids. “She even rejects very soft noodles / pasta because she tends to choke. And she totally rejects dry food like biscuits”, says Mary.
School life
Kayleen has been going to Evelyn’s SchoolHouse for a year. Mary explains, “I wanted her to go to a mainstream school because I wanted her to be in a normal environment, and mingle normally with kids. She is very happy there, the teachers are also kind and accommodating, and give me feedback. They don’t label her or single her out. She has many friends now, and talks about them.”
Has she ever been subject to rude remarks or stares from other parents?
Mary replies, “We are quite fortunate or blessed in that way. I do know of other parents in the Down Syndrome community who have experienced it. When people are not sure of what’s going on, they tend to protect themselves first, and end up giving off such negative signals.”
“Young children may not really understand but as they grow older this sort of behaviour does affect them. We might think that children with Down Syndrome are intellectually disabled, but they do observe, listen, pick up subtle cues and they do get hurt.”
“Kayleen is still too young to understand, is still leading her happy life with family and friends. I have had experiences with the public when I have brought her outside with the feeding tube on, they like advising me on what I can do to help Kayleen.”
“I have also seen people stare at her rudely, or get too curious. I have never heard any negative remarks about her, but people who don’t really understand what Down Syndrome is all about might comment, ‘She is like that lah, because she has Down Syndrome’, which might not really be true.”
Connecting with other mums
Mary is a former teacher who is “currently on no-pay leave, but still under the Ministry of Education (MOE)”. Perhaps that’s why she loves imparting whatever she has learnt to other mums. She says, “We have a group of over 70 mums, all have children with Down Syndrome, ranging from newborns to 10 years old, it’s a WhatsApp chat group. We ask advice, share our joys and discuss anything related to Down Syndrome. We also try to have gatherings once in a while for parents and children to meet up.”
“Not many parents know whom to approach when they realise that their child is a special needs child. So, 6 of us mums wanted to do something for the special needs community in general, so we started this online parenting magazine called Special Seeds.“
“All our children have different special needs, and we faced a lot of issues finding information for ourselves, so we thought of having an online platform, where we could gather everyone’s advice, testimonials, inspirational stuff… we started it last year, and we continue to do it this year”, says Mary who also blogs about Kayleen.
Advice for mums
We ask her what advice she has for other mums. Mary shares, “For those who have just got their prenatal diagnosis, I would say evaluate the diagnosis together with your spouse and come to peace with whatever you decide.”
“Even if I were given a choice again, I would still choose to keep her with Down Syndrome, without changing a thing. We value whatever we have gained in the last 6 years much more than the challenges we have faced.”
“For mums whose children have been diagnosed with special needs, I just want to say, take time to know your child. There will of course be a grieving stage. Take your time to grieve, but at the same time, look beyond the disability, and slowly you will be able to get connected, and understand them better.”
“That’s how we learn to embrace them in our lives. Just love and believe in your child. Look beyond the diagnosis and medical facts, and what doctors are telling. It’s so unfair to reject a child based on a medical diagnosis, we don’t know what potential the child has, what journey she is destined for!”
“There is always a constant nagging worry about what will become of them when we are not around, and how society will treat him. I have friends who ask me whether I will consider putting Kayleen in a home in the future, when we get old and unable to help.”
“My answer is, I hope not. I hope that she will have friends and family members who love her enough to take care of her. For now my aim in life is to do my best to help her be independent, so that her friends and family members won’t view her as a burden in the future.”
We wish this family lots of love and happiness!
Also READ: Down Syndrome screening tests in Singapore!