“my kid bled non­stop for four days”

How do you raise not one, but two, chil­dren with a life­long bleed­ing dis­or­der? One mum shares her story with EVELINE GAN to raise aware­ness about hae­mophilia.

Young Parents (Singapore) - - THE TRAVEL ISSUE -

Ac­ci­den­tal bumps, tum­bles and skin scrapes are part and par­cel of grow­ing up. For sib­lings Faith and James Loh (pic­tured over­leaf), how­ever, th­ese mi­nor child­hood mishaps can po­ten­tially cause mas­sive, un­con­trolled bleed­ing.

Faith, seven, and James, six, suf­fer from hae­mophilia, a life­long bleed­ing dis­or­der that pre­vents their blood from clot­ting prop­erly. This means that wounds may take an ab­nor­mally long time to heal. Bleed­ing may also oc­cur in­ter­nally, into the joints or mus­cles.

“Once, Faith had a mas­sive bump on her head that re­mained for six months. There wasn’t any blood ow­ing out, but the bleed­ing was still hap­pen­ing – in­side. Some peo­ple thought she was be­ing abused,” shares their mother Anne, 44.

Anne is a carrier of the hae­mophilia gene and had un­know­ingly passed the con­di­tion to her chil­dren. The con­di­tion is so rare that it af­fects just 300 to 350 peo­ple in Sin­ga­pore, ac­cord­ing to gures from the Hae­mophilia So­ci­ety of Sin­ga­pore (HSS).

Even more un­com­mon are girls like Faith, as hae­mophilia af­fects mostly males. Anne’s youngest child, Beth, three, does not have the dis­or­der.

The stay-at-home mother dis­cov­ered their con­di­tion only af­ter James un­der­went a tooth ex­trac­tion at the age of two, which caused him to bleed con­tin­u­ously for days.

“We didn’t sus­pect any­thing at rst. The bleed­ing wasn’t ob­vi­ous in the day, prob­a­bly be­cause James was swal­low­ing a lot of blood through­out the day. The bleed­ing con­tin­ued while he was sleep­ing so when he woke up, there would be blood ev­ery­where – on his face, the pil­low, sheets and mat­tress,” says Anne.

By the fourth day, his face had lit­er­ally “turned white” from the mas­sive blood loss, she shares. James was rushed to the Chil­dren’s Emer­gency at the hospi­tal, where he was given a blood trans­fu­sion and had his empty tooth socket stitched up. Even then, blood con­tin­ued ooz­ing out from the stitches and his wound took months to heal.

Tests later showed that James was suf­fer­ing from a se­vere form of hae­mophilia. This means that he has less than 1 per cent of nor­mal clot­ting fac­tors (pro­teins in blood that con­trol bleed­ing) in his blood. In this group of haemophil­i­acs, bleed­ing episodes tend to oc­cur fre­quently and spon­ta­neously even when they do not sus­tain an in­jury.

The bad news did not end there. Al­though it is un­com­mon for girls to get hae­mophilia, Faith was not spared.

“I was in total shock and could not be­lieve it. I had not ex­pected Faith to get it too, be­cause girls are usu­ally car­ri­ers of the gene. At the time, I was eight months’ preg­nant with my third child. I re­mem­ber cry­ing non­stop and be­ing ter­ri­bly fear­ful of the un­known,” says Anne.

OVERCOMING HER FEAR OF NEEDLES

De­spite her in­tense pho­bia of blood and needles, the brave mum learnt to wield a sy­ringe so that Faith and James can be treated at home. This in­volves in­ject­ing clot­ting fac­tors that her kids lack, which spares them mul­ti­ple trips to the hospi­tal.

It took her a year to pluck up the courage to ad­min­is­ter their treat­ments her­self. In the be­gin­ning, the kids had to en­dure many in­ac­cu­rate and painful pokes, some­times up to nine tries and over two hours for a sin­gle shot.

“They’d scream and shout when­ever I didn’t do it right. Faith would pray very hard for me to get her shot right the rst time,” says Anne.

“To think I used to be the type of per­son who would feel faint at the sight of blood – I didn’t even dare to hold my ba­bies dur­ing their vac­ci­na­tion shots. But I have to ad­min­is­ter the in­fu­sions for them now be­cause the in­jec­tions are nec­es­sary and life-sav­ing,” she adds.

With­out proper early treat­ment, haemophil­i­acs will suf­fer long-term prob­lems in adult­hood. For in­stance, re­peated bleed­ing episodes can dam­age the joints and lead to dis­abil­ity over time, says Melvin Tan, a mem­ber of the ex­ec­u­tive com­mit­tee of the HSS.

Some­times, se­ri­ous com­pli­ca­tions such as in­ter­nal bleed­ing in the brain, which can lead to death, may also oc­cur.

Faith’s con­di­tion is classied as mod­er­ate, and she cur­rently re­ceives treat­ment on-de­mand when she ex­pe­ri­ences a bleed. But with James’ se­vere con­di­tion,

“Once, Faith had a mas­sive bump on her head that re­mained for six months... Some peo­ple thought she was be­ing abused.”

he has to un­dergo twice­weekly in­fu­sions, known as pro­phy­laxis, to pre­vent spon­ta­neous bleed­ing.

So far, the treat­ments have given him a good qual­ity of life and he is able to still en­joy a nor­mal child­hood, which his par­ents are grate­ful for.

“The kids can still go to the play­ground or go scooter­ing wear­ing pro­tec­tive gear, of course. We usu­ally time th­ese ac­tiv­i­ties on the days James re­ceives his in­fu­sions and let him play more vig­or­ously,” she says.

Al­though Anne takes mea­sures to pro­tect them from in­juries, such as child­proong the house with rub­ber mats and cor­ner guards, she knows she can­not keep a watch­ful eye for­ever.

Be­ing over­pro­tec­tive would not be good in the long run as they need to stay ac­tive to build strong mus­cles for good joint health, she ex­plains. James is home­schooled, while Faith started Pri­mary 1 this year; she en­joys at­tend­ing school and mak­ing new friends.

“There is only so much we can do and worry about. I have to trust in my faith, and count my bless­ings that noth­ing se­ri­ous hap­pened to them be­fore they were di­ag­nosed. Look­ing back, I’m re­ally thank­ful that I had a rel­a­tively stress-free time with James and Faith in their rst few years be­fore we found out they had hae­mophilia,” says Anne. LIFE MADE EAS­IER There is no cure for the con­di­tion, but newer treat­ments can dras­ti­cally im­prove qual­ity of life. In May this year, Colorado moun­taineer Chris Bom­bardier, who suf­fers from se­vere hae­mophilia, con­quered Mount Ever­est, prov­ing that ad­vances in med­i­cal care in this area have come a long way.

“In the 1960s and 1970s, a child di­ag­nosed with se­vere hae­mophilia would prob­a­bly not even live into adult­hood. To­day, doc­tors un­der­stand that pre­ven­tive treat­ment, even be­fore a bleed hap­pens, is im­por­tant. In Sin­ga­pore, we are for­tu­nate to have kept pace with med­i­cal ad­vance­ments in the area of hae­mophilia care,” Melvin says.

The fu­ture also seems promis­ing for th­ese in­di­vid­u­als, with some longer-act­ing treat­ments now avail­able on the mar­ket so that haemophil­i­acs do not need to top up their clot­ting fac­tors so reg­u­larly.

How­ever, Anne can’t help but worry about the fu­ture. Treat­ment costs are ex­pected to rise as the chil­dren will re­quire higher dosages as they grow.

James’ treat­ments alone cost at least $2,000 per month, some­times go­ing up to $4,000. Al­though a sub­stan­tial pro­por­tion of the cost is sub­sidised by the gov­ern­ment and HSS, the Lohs still have to shoul­der other out-of-pocket ex­penses.

“We do worry (about the costs), be­cause at some point, James will have to af­ford the treat­ment him­self. Hope­fully, med­i­cal sci­ence would have caught up by then and he’ll need fewer in­fu­sions. I also hope that my chil­dren will even­tu­ally be able to man­age their con­di­tion and muster the courage to ad­min­is­ter their own in­jec­tions,” Anne says.

De­spite the many chal­lenges, she tells par­ents of newly di­ag­nosed chil­dren not to be dis­heart­ened.

“Don’t be afraid, be­cause with med­i­cal sci­ence, it is now pos­si­ble for a child with hae­mophilia to live a nor­mal life,” she says.

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