Jayson Tan

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Written by mummy: Jamine

My “Little Boy”

Hi, I’m a full time working mum to 3 kids age 8, 6 and 3 years old.
My youngest was officially diagnosed with achondroplasia when he is 2 months old with a blood test done in KKH. Achondroplasia is a form of dwarfism, short stature with short upper arms and limbs.

His story started when I was pregnant with him at 28 weeks.
At a normal 3rd trimester check-up with my gynae, when doing the measurement, he detected my baby’s upper limbs are shorter than normal. Since he had a case before similar as mine, he was saying my boy could have achondroplasia. My mind instantly became blank, I was in a shock. I had 2 older kids and they were all normal. I’m still 31 and my husband 32 years old and we’ve never resorted to using viagra like the others, we were still consider young, and how can we have a genetic problem! During the 20 weeks detailed scan, everything was normal, therefore he called for another detailed scan at week 32.

The next 4 weeks passed like a torture, I kept on eating, thinking that he may not have enough nutrition, therefore not growing. Then came the 32 weeks detailed scan, enlarged kidney, short femur length… result showed signs of achondroplasia. I was devastated, my world came crashing down. I did not know what to do. Doctor suggested me to give birth at 37 weeks due to his larger head. The rest of the weeks till birth, I was in a zombie state… I went to web and searched achondroplasia, all information were scarily, still birth, bowed leg, osa, ear infection, kyphosis…

At 37 weeks, I was induced and gave birth to my little boy. At first look, my gynae confirmed his suspicion, my boy had achondroplasia with his short femur, bell shaped belly, larger head and no nasal bridge. Due to my case, he had already arranged a paediatrician on standby. The paediatrician came in shortly, examined him and he too confirmed his case and sent my boy for an x-ray. Even though both doctors had confirmed his diagnose, I denied the fact. I cried all the way to the ward. No one dare to talk to me, my one understand my feeling. Thoughts came by, how am i going to cope in future, how am I going to overcome all the difficulties due to his special. Every night I was crying to myself, praying that all these were not real… I looked at my boy, he is such a sweet boy, but why must his fingers be curved, his bone short…  I denied the fact and pretended like nothing of big deal happen during the day but at night when I was alone, I was crying…

After discharged, there was once my sister dropped by my house to help me run errand. She saw that I was sad and talked to me. She said “He is your boy, if you don’t pick yourself up then, no one will be able to help him.” These words immediately knocked sense into me, I had got to help myself before I can help him. I went through the web again and search in forum for support. There is no helpful find in Singapore and I went to oversea forum. It was in US Baby Centre forum that I came across some mummies posting about achondroplasia and if anyone needs support, to email them. I emailed a few mummies, and to my surprise, the next few days, they replied my mail. They eased my worries and answer all my doubts. They were saying it’s not the end of the world, it’s the start of a new world, my boy will bring me more satisfactory happiness than any of my kids. They provided me tons of medical info, how to handle my boy, what not to do and do with my boy, things to look out for… My mind became cleared after months of denials, I must help my boy overcome all his difficulties, be it medical, social or mentally…

When I went back to my gynae for review, I told him my worries and he recommended 2 genetic doctors for my boy to follow up with. I immediately called KKH and NUH and made appointments with them. The operators were kind enough to give me a slot as soon as possible and the very next week, my boy went to see them. Both doctors were kind enough to let my boy be in subsidised rate even though he went to them without referral as he will need to see them for the rest of his life. He was also given an option whether or not to go for a blood test to confirm his diagnose, we agreed as we wanted a closure for his diagnose. Through my doctor, I also got to know Kenneth, who is the VP of RDSS. Through him, I had got advices and cheaper supply of my boy necessities…  There were events arranged by RDSS for parents of special need kids to mingle around too.

Cut it short now, he’s 3, he had brought lots of joy to my life. Even though he is slow in his development, he had got his own ways to reach his milestone, he can’t crawl on all fours but he does army crawl. The way he smiles is memorising, very sweet. He got severe OSA of which he need a bipap during sleep. He also got frequent ear infection which need him to have ear tubes put in. Right now we are dealing with his moderate hearing loss which require him to see a speech therapist and maybe a hearing aid soon…

I don’t know what lies for him in future but one thing for sure, I will be there for him. I hope in Singapore, Government will give more supports for parents like us to deal with our special need kids. People will be more open minded, also not to let bullying take place…

 

9 Comments for : Jayson Tan
    • wei ting
    • 27/02/2016

    hi, my girl is 9 and she has achondroplasia too. perhaps we can link up.

    • You are welcome to contact RDSS and we can link you to the family.

    • Natalia
    • 07/06/2016

    Hi, i’m pregnant 37 weeks now, my baby also diagnosed Achondroplasia or down syndrome by gynea. She found out that my baby has short femur and humerus around 7 weeks behind, short nasal bone, frontal bossing, and cardiomegally. This is my first pregnancy. I’m so devastated. Hopefully a support from other mums who has the same experience in Sg to face this.

    • Hi there. Your journey to bring up a child with rare condition is no different from those with typical child. In fact, you will get to learn more, especially on the medical and developmental needs. We will contact you and link you to other families in RDSS with children diagnosed with the same condition.

      • amal
      • 15/11/2016

      hi i hope is all well you
      and im going through the same issue my baby measures 8 weeks behind with bowing femurs and
      im due dec 26 but they inducing me nov 25
      can please update me with your story
      thank you

    • Sh
    • 17/07/2016

    Hi, my bb has short femur and hemurus that r below 5 percentile. Suspecting of achondroplasia or growth restriction. Currently pending to see specialist in 2 weeks time for diagnosis. But I would like to understand more of achondroplasia and what are the things to look out for during fetal ultrasound that determines achondroplasia?

    • Hi, we will email to you and if like we can link you to Jayson’s family.

    • Shiyi
    • 12/04/2018

    Hi. Pd suspected 6 weeks old has hydrochonplasia. I would like to get help and support and advice please.

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