“Doctor, you siao (Hokkien for “crazy”) is it,” Nancy Koh recalls saying to her obgyn (“he is Catholic and against abortion”) when he mentioned termination as an option following her baby’s Down syndrome diagnosis. “I was very frightened,” the 51-year-old administrative manager says, “but my husband was very encouraging. We did some reading on Down syndrome (DS), and he told me that he would support whatever decision I made.”
Did you know that one in 1,000 babies in the world is born with DS? In light of World Down Syndrome Day (WDSD) on 21 March, we ask mums of children who have DS how they prepared for their baby while pregnant. You’ll meet administrative manager Nancy Koh and stay-at-home-mum Amirah Ismail today, and teacher Samantha Lee tomorrow.
One common theme that runs through their stories: they would not change a thing. As Amirah shares, “Never underestimate their potential and abilities. My child surprises me each day with the things that he is capable of doing, at his own pace and in his own time.”
“Will my baby grow up well?”
Nancy Koh, 51, is an administrative manager. Her daughter, Melody Chay, will be 9 in July
“I burst out crying when I spoke to our parents. Initially, they were not encouraging as they were worried that I would not be able to handle it. With friends, I just told them that my baby has special needs and that she has DS.
Other than swollen feet and weekly injections to stabilise it, my pregnancy was a breeze. After Melody was born, my hubby was worried that I had postnatal blues, as I would get upset when people stared at Melody.
Melody was rejected from her infant care as she was not able to walk at 18 months, despite us informing the infant care centre of her diagnosis when we enrolled her at three months old. When they told me, I cried all the way home.
“When one gate has closed, another will open”
Then I decided that when one gate has closed, another will open for me. True enough, we found another school that was more receptive to Melody and her needs.
Melody was initially in a mainstream primary school, but her form teacher said that she could not connect with her. I was upset, but grew out of it as I can see that she is learning better in a SPED (special education) school.
(See also: Resources for Families of Children with Special Needs in Singapore)
Having Melody has made me a stronger person. She has taught me to be more patient and to realise that things will eventually fall in place. It’s just that they may take a little more time to do so. I have learnt to slow down and appreciate each day better. For parents who are expecting a child who has DS, be strong for your child, who is a blessing.”
“Never underestimate their potential and abilities.”
Amirah Ismail, 35, is a stay-at-home mum. Her son, Muhammad Yusuf Bin Muhammad Yazid, is 18 months old
“I first found out about the possibility of my son having Down syndrome (DS) when I went for the DS screening at 13 weeks of pregnancy. During the check, the sonographer suddenly went out of the room to call another sonographer in. When that happened, I sensed that something was out of the norm.
Right after the scan, we were told to meet with the doctors for the results of the scan. They told us that our baby had an absent nasal bone and a thick neck. These are early markers for DS. The estimated risk of our baby possibly having DS was a one in two chance. After meeting with the doctors, they scheduled to meet up with a counsellor who shared with us about DS. The counsellor also told us about further tests that we could do to confirm the DS diagnosis. I remember feeling numb and simply zoning out. I was very shocked and could not speak much. Both my husband and I did not have any history of DS on either side of the family.
In my mind, at that point in time, I asked how this could happen. I was not that old to have such a high probability of having a child with DS. In the counsellor’s room, I remember staring at the information about DS that was shared to us. I remained quiet and kept to myself all the way home. When I reached home, I could not hold in my emotions any longer, and just cried.
The first thing that I did was to ask God, “Why me?”, “Why us?”. I also cried a lot. I read a lot of books on faith to surround myself with positive thoughts throughout my pregnancy. Voicing out and sharing my thoughts and emotions with my husband as well as close family members and friends helped me deal with the fears and concerns that I had.
A roller coaster pregnancy
My pregnancy was a roller-coaster of emotions. Even though we only had a probable diagnosis of DS, I still pre-empted myself of this possibility. I was in denial, and could not experience the happiness of being pregnant with our first child.
I cried a lot and kept questioning God. I cried whenever I saw pictures or videos of people with DS. I could not bring myself to read anything about it because I would only think of the negative things related to DS.
But all that changed instantly when I held my baby for the first time in the NICU. It felt so surreal. My only thought at that moment was to protect and love him with a mother’s unconditional love. Nobody and nothing else mattered.
Coming to terms with the diagnosis
It took me a while to come to terms with the diagnosis during my pregnancy. Since we did not proceed with further tests to confirm the diagnosis, I held on to a glimmer of hope that my baby did not have DS.
Furthermore, being a first time mother did not prepare me for a lot of things that were to come. My initial fear was very superficial. I was concerned about what others would think when they saw him. Do I have to tell everyone that sees him that he has DS? Two years on, I am gradually learning to take things one step at a time and let him learn and grow at his own pace.
From the initial stages of the pregnancy, my husband had accepted the fact that our son could have DS. He was not keen at the thought of terminating the unborn child. I will always remember him telling me, “How can we just end a life without giving him a chance to live at all?” He reassured me that we would support one another in bringing up our child together.
Breaking the news
We first broke the news to both our parents when we sat them down and told them the results. We are blessed with very supportive parents who, despite their initial fears like ours, were very happy at the thought of having their very first grandchild. I remember my mother-in-law saying that they were going to treat the child like any other child.
We then slowly broke the news to extended family and friends who were nothing but supportive for us. My friends and family checked in on me and offered many words of encouragement.
Before my baby was born, I had a lot of uncertainties and unknowns due to my own lack of understanding of what DS is all about. After he was born, the biggest challenge was finding a suitable and affordable childcare that would take in children with special needs. The schools that we applied to were either full or did not take in children with special needs as their teachers were not trained.
If I could go back to before my child was born, what I would do differently would be to read up more about DS so that I have some knowledge on how to support my child better, especially in the early stages.
We get early intervention support from the Down Syndrome Association (DSA) and AWWA’s EIPIC program. These two programs provide great support in supporting my child’s overall learning needs in his early years. The teachers also check in with caregivers to find out on how we are coping.
(See also: How Early Intervention Programme (EIP) Can Help Children with Learning Challenges Prepare for School)
The Down Syndrome Association (Singapore) and AWWA also provided support through workshops. In addition, I also joined a DS group chat on WhatsApp to connect with other mothers of children with DS. It is a great platform for sharing experiences and information.
Planning for childcare and education
In terms of education, it can be hard to craft out a definite plan. A lot of research and planning has to be done. At his age of 18 months now, we are comfortable with his early intervention classes at DSA and AWWA. I work closely with his teachers in maintaining communication about his learning goals, and raise any concerns that I have. This allows me to plan, monitor, and craft learning activities for him at home.
For parents-to-be who are expecting a baby with DS,
- Allow yourself to feel what you need to feel because your feelings are valid.
- Surround yourself with people you are comfortable with in sharing your thoughts and emotions with
- Follow social media accounts of families with DS where they share their stories and experiences. Knowing that you are not alone in this journey can help (this has helped me a lot!).
- Most importantly, love your baby because he has all the other qualities and needs that other babies have, with just a little extra chromosome added! ☺
(See also: Parenting her Son with Down syndrome is hard but “love can change our hearts and our minds” says this Mum)
Images courtesy of Amirah Ismail and Nancy Koh