Parents of children with congenital heart disease often have to deal with the fear and worry of the impact of the condition on their child. Priya Kulasagaran speaks to three parents to find out how they cope with being “heart parents”.
When you are expecting a baby, prenatal scans are normally part and parcel of the pregnancy process.
Like many other parents-to-be, Catherine* was expecting to be told that her child was healthy and there was nothing to worry about.
Around 24 weeks in however, Catherine’s doctor broke the news; her baby had a malformation, and it looked to be a serious heart defect.
“I don’t think I’m exaggerating when I say it was the worst thing that has happened to me,” she says.
“I didn’t know how to react. I remember coming home from the hospital in a daze, and spent the rest of the day in my room, not talking to anyone.
“I didn’t understand what was going on; how can you deal with knowing that your baby might have to be rushed off for surgery right after being born?”
While prenatal scans these days are better at picking up possible signs of congenital heart disease, there can still be some uncertainties when it comes to making a concrete diagnosis.
For Catherine, the fear of losing her baby made her go through the rest of her pregnancy in a haze of worry.
“I felt like I couldn’t talk to a lot of people about it, I didn’t even want to talk to my husband about how I was feeling at first.
“The doctors and nurses tried their best to be supportive, they kept telling me that it would be okay, but I think I just stopped listening after a point.
“Because there’s still that risk you know – no matter how small the possibility, there was still that possibility he wouldn’t make it,” she says.
What is hardest for Catherine to admit is that she felt that she was initially not able to bond with her baby and “enjoy her pregnancy like other normal mothers”.
“After we found out, it was as if I couldn’t do all the usual planning – buying baby things, clothes, things like that.
“At the time, I thought that I shouldn’t get too attached to him (her child) before he was born, because I was so afraid of losing him; I felt like a terrible mother for thinking that.
“But at the same time, I couldn’t voice out the worry because I thought I had to appear strong,” she says.
She adds however, that the early detection was a big help in hindsight.
“It was good, because they were prepared for him from the start,” she says.
“After my son was born, they took him to the special care unit and monitored him to see what exactly they could do to help him.
“He was diagnosed with pulmonary artery stenosis (the narrowing of the blood vessels), and that meant surgery.
“Now I know it’s quite a regular type of surgery, and we have very qualified doctors, but back then it just meant more waiting and worrying.”
What got Catherine through the second wave of uncertainty was being able to finally open up about how she felt, particularly with her husband.
“I don’t know why, but I couldn’t really discuss it with him at all at first (during her pregnancy).
“And it was straining the relationship a bit – the situation affected him too, but we would just talk about everything else but this big worry about our child.
“What changed it for me was being in the hospital, after delivery, and he just suddenly started crying and saying he was scared; and I started crying as well.
“I think we scared the nurses quite a bit, the way we broke down, but maybe we needed that because it made me want to share how I felt, to let him know he wasn’t alone in feeling that way,” she says.
One day at a time
Beaming at her four-year-old daughter playing in the living room, Miriam says her experience as a “heart parent” has changed her entire outlook of life.
“It sounds strange, but I’m a lot calmer about things – I’d like to think I’m a lot closer to being Zen,” she says jokingly.
“Before this, I was a big believer in planning things; getting that promotion by a certain age, then getting a house for the family by a certain year, and so on.
“We can plan all we want, but then something happens, like being told your daughter has a hole in her heart – and all those plans are completely thrown in the air.
“Suddenly, you’re forced to rethink your priorities and look at what really matters to you.”
Although Miriam shares her current philosophy in a lighthearted manner, the journey that has brought her here has been an arduous one.
It was a journey that started with her daughter being diagnosed with a ventricular septal defect, fairly soon after she was born.
“Honestly, it took me a while to register that it was something serious,” says Miriam.
“They told me that the baby was quite blue, and she wasn’t breathing properly, so they wanted to keep her to check whether there was something wrong with her lungs or heart.
“It was just so unexpected; I had a regular pregnancy and a normal delivery, so I didn’t think it was going to be too bad at first.
“The panic only kicked in about a day or two later, because I wanted to hold her and they told me no.
“When they finally told me she had a hole in her heart, then the seriousness of the problem hit me.”
From Miriam’s telling of her story, it appears that her way of dealing with the grief of the diagnosis was to learn as much information as possible.
“After they told us, my husband and I spent the day online reading everything we could get our hands on – that was our way of coping.
“Of course, that meant the doctors had to deal with a lot of questions from us; they were accommodating, but I’m sure they were sick of it after a while!
“What was important though, for me, was having a grasp of what we were dealing with.
“We were also upfront with our older son – who was six at the time – and I think that helped him understand why his little sister needed all the attention,” she says.
Miriam says she chooses to look at the positive effects of the entire trying period of having her daughter go through her treatments.
“Well I suppose I’ve certainly become stronger now, and it has definitely shown us that we can get through all this together as a family.
“Whatever life throws at us, now I know for sure that we can handle it,” she says.
What Miriam says was the hardest to deal with was realising that she and her husband had initially focused all their attention on their daughter, at the expense of other things.
“I’d say for the first year or so, it was all about her obviously; we didn’t even dare go out without one of us being around with her.
“When you’re channeling all your energy into your child, you tend to forget about everyone else including yourself.
“Of course, it’s understandable, but if you become so selfless that you start ignoring everything else, it’s bound to create other problems in the future.
“For me, it was realising that my older son was feeling ignored; he was starting to get more withdrawn, and that’s when I said I had to change things, I had to be there for him as well,” she says.
Keeping this in mind, Miriam decided to return to work on a part-time basis when her daughter was one-a-half-years old.
While her family was supportive of her decision, with her in-laws offering to help with childcare, others were not as forgiving.
“Oh yes, I got quite a bit of flak – even from a few of my colleagues!” says Miriam.
“A lot of people thought I was nuts, and that I was selfish for wanting a bit of time to myself and my career.
“But really, I wasn’t coping very well with being at home; I felt like I was cut off from the rest of the world, and I just couldn’t deal with being in that state 24 hours a day.
“I think it worked out well for her too, because I want her to grow up as ‘normal’ as possible, like any other child,” she says.
She adds that it was hard at times to juggle work and home, especially on days when her daughter was quite ill.
“Some days were hell for sure; we’d be awake all night because she wasn’t sleeping well, and leaving her for work in the morning was torture.
“But we were lucky to have support from our parents, and it was a matter of persevering and good organisation,” she says.
Latiff* realised something was amiss when his then two-month-old son was not feeding properly.
“We didn’t want to overreact, but my wife kept saying that it didn’t feel normal.
“So we took him to the doctor, and they said that he may some breathing difficulties as well, and wanted to do some tests.
“It was quite frightening when they said that they suspected that there was something wrong with his heart,” he says.
That visit ended with their son being admitted, followed by more tests including an echogram of the baby’s heart.
“They confirmed that he had a heart defect, and my world just shattered,” says Latiff.
“My wife couldn’t stop crying when they said they had to keep him in the hospital for a bit to see what sort of treatment and medicines he would need to take.
“When they told us about possible surgery to fix the issue, that’s when I just broke down as well.”
Latiff shares that he went through a range of emotions when he learnt of his son’s congenital heart defect.
“I guess I had the same first reaction as most people, which was ‘why, why my son, why us?’
“After the shock, there was a lot grief and anger – I felt very, very angry that this happened, because this innocent child didn’t deserve this to happen to him.
“As the weeks went by, and there was more acceptance of the situation, I felt grateful that we knew what was wrong, and that there were ways of solving the problem,” he says.
He adds that while talking about his feelings helped, some of his confidants were not as encouraging as he had hoped.
“At first, when I shared the problem with extended family and friends, a number of them did not help alleviate our fears about letting our child go for surgery.
“Of course there is a risk with any medical (procedure), we knew this, but I trusted the professionals to do the best they could.
“I knew these people (his relatives and friends) meant well, and were probably as worried as we were, but sometimes I don’t think they understand the reality we are in.
“When you only have a limited number of choices, you just have to pick the best one for your child, and hope it all works out,” he says.
In Lattif’s case, it all did work out, and his son is now a bright and active three-year-old.
“We do still have to monitor him, and he may need more treatment in the coming years – but we’ll just deal with it as it comes,” says Latiff.
“That’s one thing I’ve learnt from all of this, to let go of worrying all the time and just do the best you can – for yourself and your family.”
Latiff adds that this is the mindset he tries to adopt when trying to be less protective of his son.
“At first, I was very careful with him, things like making sure he wasn’t overexerting himself.
“Then I thought, it wouldn’t be right to monitor him like that – he needs to have normal childhood experiences as well, and find out what his limits are.
“I still keep a close eye on him, but these days I try and let him be a bit more,” he says. Again hanging.