SingaporeMotherhood | Parenting
May 2019
Haemophilia & GDD don’t stop Jue Ming from being the Light of his Mother’s life
A child with Haemophilia can be hard to care for, as they can be easily hurt and bleed internally. Payroll assistant Lee May, 44, mum to Lee Jue Ming, 10, know that first-hand. Born with Haemophilia B, her lively boy cheers this mother’s heart with his innocence and his laughter, making each day’s burdens easier to bear.
“At two days old, doctors at the hospital where he was born found that Lee Jue Ming’s head circumference had increased. This isn’t normal, so he had to undergo a barrage of tests. They revealed that he had Subaponeurotic Hemorrhage, bleeding between his skull and his scalp.
In addition to that, Jue Ming has Severe Haemophilia B or Factor 9 deficiency (Haemophilia is a bleeding problem due to lack of normal levels of a clotting factor). Haemophilia B is also known as the Christmas disease. When the doctor told us, your son has Christmas disease, we were like, ‘Huh? What is that?’
Haemophilia is genetic (although there are some mutated cases). It is usually passed on by the mother. The female is usually the carrier, and the male gets it. Of course, I felt a lot of guilt about it. But life still has to move on.
Moving On after the Haemophilia Diagnosis
Haemophilia is quite rare in Singapore — there are only 300-plus people with this in Singapore. Hence we Googled it and got information on the disease and learnt how to take care of him.
My husband quit his mechanic job when Jue Ming was about a year old, to look after Jue Ming full-time, and so he could bring Jue Ming to all his medical appointments and therapies.
Yes, it’s usually the mother who stays home to look after the child. But I earn slightly more than him, and Jue Ming was a big baby (about 3.895 kg at birth) so my husband’s strength helped.
We kept thinking, ‘Why did this happen to us?’ Then came the worry: how to take care of him? In addition to Haemophilia, he had GDD (Global Developmental Delay) too. That affected his development so he did not follow the usual baby milestones.
Initially we were very worried. We let him wear socks, just normal socks, but when we took out the socks there would be bruises, which meant there was internal bleeding. And of course the medical costs were another problem.
(See also: Common Newborn Conditions Every Parent Should Know)
Handling the High Medical Costs
One vial of his medication (Factor 9) is enough for a 10 kg child. As the child grows, you will need more. Currently, Jue Ming needs three vials. One vial – after all the subsidies, is $100-plus. So three bottles is $300-plus. Without subsidies, each vial costs over $400. Thankfully, the hospital’s MediFund helped to cover the costs.
Jue Ming been taking this since he was born. Initially we only let him have it when there’s a need. After that we went every three weeks. Because it is expensive, we would only bring him to the hospital for an infusion when he has a bleed.
He can have spontaneous internal bleeding even if there is no fall. So even something as simple as sitting in a baby walker could hurt him.
Once when he was about one year old, we brought him to the hospital for physiotherapy and to see the doctor for a checkup. It took a whole day and we only got home in the evening.
I was helping him to change his clothes, and lifted up his hand. He started to cry. When I compared his hands I noticed that one was bigger than the other. That’s when I knew that there was a bleed. We went back to the hospital. He had to be admitted and given Factor 9 every eight hours until the internal bleeding stopped.
Coping with Incidents and Accidents
The biggest episode that scared me? There were a few. One was that bleed in his hand when he was a baby. Another time he was sitting in a playpen, and he suddenly toppled and knocked his head. I had such a scare! I told my husband we’d better bring him for a scan. My husband monitored him and said he seemed okay, that there was no vomiting, that he seemed fine.
When he started learning how to walk we would know if he had internal bleeding because he would start to limp. Then we would have to bring him to the hospital.
Another time was when his molars started coming in. His gums would bleed. Sometimes it would happen in the middle of the night. So we’d let him bite on cotton gauze and bring him to the hospital the next morning. The whole cotton gauze would be bloody.
Because of his GDD, and his muscle tone is very weak. There are many things that he can’t do. I see other kids with Haemophilia who can run like normal kids. Sometimes I think, ‘How come Jue Ming cannot do that?
(See also: Children’s Clinics and PDs in Singapore open 24/7, on Weekends, and on Public Holidays)
Staying Mentally Strong through Haemophilia
But, perhaps thanks to his conditions, Jue Ming is a very happy child. Because of his GDD, his level of maturity can be two to three years behind that of his peers.
He sees things in very simple ways. For him, life is perfect, he lives in a perfect world. He’s very innocent.
As a consequence of this he is also very confident, and has no stage fright at all. There was this one time, when he was six or seven, when he was invited to the Istana to give a token of appreciation to the ex-president. In front of everyone, all the dignitaries and the reporters, he was very calm and confident. I guess it’s because the gravity of the situation did not occur to him. Unlike him, the other kids were very shy.
Jue Ming attends mainstream school, but he had a year’s delay. In school he seldom plays with the boys. He’s usually with the girls. But sometimes the girls don’t want boys with them so he is by himself. We do have concerns about bullying. It’s been happening since P2 hence we transferred him to another school. Jue Ming is currently coping well in his new school.
(See also: Why ‘Safety First’ may not be the Best for your Kids)
Looking Ahead to the Future
For now Jue Ming seldom has emergency cases. The last one was when our family participated in an event for charity. Jue Ming did not sit down for the entire day as he was helping to man a stall. I think he overworked his knee at the event. After that we had to bring him to the hospital for infusion for four days.
I get the most support from family, friends, and of course, the Haemophilia Society of Singapore. We have a group chat so if something happens and we’ve never come across it before, we discuss about it. We also joined the Rare Disorders Society of Singapore. He has made good friends with the children in these groups.
At home he watches TV and reads. He likes the Harry Potter series. This started because his sister liked Harry Potter. So my husband borrowed the audiobooks from the library and taught him how to read while following the audiobook. That’s why Jue Ming wanted a Harry Potter-themed birthday party.
Jue Ming always been thoughtful. When I asked him what birthday present he wanted, he said, ‘I don’t need any gift. I just want my friends to attend my birthday party and I will be happy.’
You can’t forsee what will happen in the future, so we’ll handle things as they come. My wish for him? That he is happy and healthy. That’s the most important.”
Jue Ming’s Harry Potter-themed Birthday Party
Jue Ming’s Harry Potter party wish was granted by the Make-A-Wish Foundation in Singapore on 23 June 2018. It included:
- dinner at Platform 1904 – a Harry Potter-themed Café
- a surprise Harry Potter-themed gift box
- an ‘Amazing Race,’ which led him from home to the party at Siloso Beach Resort, Sentosa
The hotel ballroom was transformed with Harry Potter-themed decorations, props and outfits. The children played games according to the theme, including everyone’s favourite; Snape Piñata. All guests went home with a Harry Potter-themed goody bag, and Jue Ming’s family enjoyed a one-night staycation at the eco resort.
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