‘Doctor told me my daughter would be a ‘vegetable’’

Janelle and Glen with kids Charlie (3) and Katie Louise (7)
Janelle and Glen with kids Charlie (3) and Katie Louise (7)

As a teenager Janelle McKee found herself pregnant with her first child, like so many young women she began preparing herself for what was going to be one of the most challenging times of her life.

Just 17 years old she was both excited and nervous about becoming a mother for the first time and received a wealth of support from her immediate family.

By the time she was 18 Janelle and her boyfriend Glen Butler would welcome their beautiful little baby girl Katie Louise into their family.

Within weeks, just as they were settling into parenthood, Janelle and Glen’s world came crumbling down around them as doctors revealed the shocking truth about their little girl’s health.

Throughout her pregnancy Janelle, now 25, became used to having tests and being in and out of hospital. She had been diagnosed with preeclampsia and the pregnancy had been difficult.

But everyone around her had been hiding a deeper secret, doctors had suspected something was wrong with Katie Louise but decided that Janelle was too young to be told.

“We were never told anything was wrong throughout my pregnancy,” said Janelle.

“No one said anything. I was only made aware when Katie was born that there were problems. When she was to be delivered two weeks early they never explained why. They just told me that it was better for the baby, they didn’t tell me that they were concerned or anything like that.

“Apparently they didn’t want to tell me because I was so young, they judged me because of my age. They were going in and telling my family members that there might be something wrong but not me.”

Finally the day came when Janelle would be told that Katie Louise had microcephaly, which is a congenital condition resulting in a smallness of the head and is associated with incomplete brain development.

What made it worse was how she was told of the seriousness of Katie Louise’s condition. A moment etched in her mind forever.

“It was horrendous at the start,” explained Janelle.

“When I first had her it was in the hospital they told me there were a few issues here and they needed to do a couple of tests. The day before I went home they told me that her head was small but still at this point hadn’t told me what that meant.

“A week later I was then sent to the Royal Victoria Hospital to see the genetics doctor. My father and I went to the appointment, that was when I first heard the word microcephaly so I asked the doctor to explain it to me.

“His exact words to me, I will always remember them, were ‘if you take a child of her age group, put that child into a cage and give it water and feed it, give it no love, no care or attention, nothing, that child will turn out exactly how your child is going to be’.

“I was also told that she would not be able to feed herself she would not be able to walk, talk or do anything for herself. He told me that she would be left as a vegetable, she was only a week old.”

With no hope from the medical profession Janelle was left to pick up the pieces.

“I was devastated, it literally broke my heart. That’s how he was describing my little girl. Telling me that I could give her all the love and care I wanted but that’s how she would end up.”

First time mother Janelle was not to be beaten, as Katie Louise showed little glimmers of hope she realised that the doctor was going to be very wrong.

She said: “When she was about nine or 10 months and I could see that she wasn’t hitting the milestones of other children I realised that the doctor might be right. But then all of a sudden she learnt to sit up and then she was pulling herself up onto the furniture and that was the turning point for me. I knew he was wrong about my little girl.

“Today Katie Louise obviously has problems, she has ADHD, has learning difficulties and can be very hyper, her muscles spasm up sometimes and she’s still in nappies and she doesn’t speak.

“But she’s not the little girl that doctor described to me. She learnt to walk late and although she cannot speak she can communicate when she wants something by pointing and now she’s learning to sign at school. As well as that she can get things that she wants and will respond if I ask her to do something like getting her shoes.”

Each time Katie Louise did something new Janelle and her family saw it as a little victory and hoped that she would continue to improve, even if it was slowly.

“I remember thinking ‘this is great, this doctor has been wrong the whole time’. And while there was still a lot she couldn’t do I was focusing on what she could do,” said Janelle.

Looking after seven-year-old Katie Louise was already difficult, stretching the family to the limit. So, when it came time to consider whether or not they should have another child Janelle and Glen thought long and hard.

Being a genetically inherited condition meant there was a high chance that if they had another child it would most likely have the same problems as Katie.

Eventually the decision was taken out of Janelle’s hands.

“I was quite wary of having another baby but I got pregnant with Charlie unexpectedly,” said Janelle.

“When I found out I was pregnant it was the first thing that I thought about, that it was going to happen all over again.

“But there was no test for it, they can tell if a child might have the condition but they can’t do a test for sure. But I knew in my heart he had it.”

Luckily for the family Charlie’s condition wasn’t as severe as Katie Louise’s and as a result he has been able to progress a little further than his sister despite being only three years old.

“I didn’t need anyone to tell me, I knew by looking at Charlie. There are certain facial features that most children with microcephaly have, I just knew.”

For both Charlie and Katie Louise, attending the Mencap Centre in Belfast has been vital in the children’s progression as well as providing crucial support for the family said Janelle.

“Charlie has started to develop speech patterns, he took an epileptic fit and amazingly it did something to his brain, it’s like it reset it. Now he’s started to put words together and because he is talking Katie is trying to copy him.

“Going to the Mencap Centre gives them the ability to interact with others and helps me get help and advice from other people. I’m even at the point where I can help advise people too.”

Janelle’s positive attitude and unwavering determination to see her children get the best out of life is admirable.

Despite a hard start she’s both hopeful and realistic about what they will be able to achieve and does everything she can to support them.

So much so that from an early age Janelle accepted and realised that her own hopes and dreams would have to sit on the sidelines as she ploughs every waking minute into her children.

She said: “There is no treatment for microcephaly, there is literally nothing that can be done. Children with microcephaly have a lower life expectancy and Katie Louise has already surprised the medical profession.

“Me and their daddy are completely different, he would think of them being older and living on their own and I would say not a chance will they be able to go and live on their own.

“I won’t lie, it’s been hard. You never get two minutes to yourself literally from the morning to the night. I literally can’t take them both to the shop because it’s so difficult to organise, it’s a mission getting out of the house. Then if you are in the shop it’s impossible to watch them because Katie Louise doesn’t have any danger awareness. It’s turmoil when we’re in a shop.

“Glen will take the kids out to let me get the house cleaned during the day. These days we get some respite each month and while it might only be one night at a time it’s great to be able to just relax.

“It’s hard work. Sometimes I just want to say to people ‘you have no idea what I go through on a daily basis’. Somebody takes them for an hour and will say to me ‘I don’t know how you do it’, but I don’t see it like that. You just have to do it, for them.”

As a regular user of the Mencap Centre services in Belfast Janelle is encouraging people to consider taking part in the forthcoming Deep RiverRock Belfast City Half Marathon in September.

As runners across the country begin to log miles as part of their training, Janelle is hoping participants will choose to support Mencap, the event’s official charity.

Mencap supports children and young people with a learning disability, like Janelle’s son, three-year-old Charlie Butler. When he was born, Charlie was diagnosed with microcephaly, a rare neurological condition which caused his head and brain to grow slower than other children.

The Mencap Children’s Centre, now based at the new Mencap Centre in Belfast, serves two to four year-olds with a learning disability, autism and developmental delay.

Charlie started at the nursery in September 2015 and Janelle said the changes she’s seen in him since then have been mind-blowing.

“Charlie has developed a very strong bond with his key worker at Mencap, who has really brought him out of his shell,” said Janelle.

“He used to be a very timid little boy and did not like to venture out to play with other kids.

“Now he will talk and interact with other children at the park. I know this is purely because of the confidence he has gained at the Mencap Children’s Centre.”

For Janelle being able to attend the Mencap Centre in Belfast with her three-year-old son Charlie has completely changed her life.

Once alone and trying to figure out how to deal with the daily challenges of her children the centre provided Janelle with an important lifeline.

She explained: “I think if I didn’t have Mencap around I would be absolutely lost. Before I started going to the centre I thought I was the only person in Northern Ireland dealing with children with this condition.

“I felt like the loneliest person in the world, I really did. None of my friends had disabled children, I felt like I didn’t have anyone I could talk to about the everyday challenges.

“Just to have someone that I can sit with and have a chat and a sip of coffee or tea has made such a difference for me.

“Mencap has not only transformed Charlie’s life, but also my own.

“The team have been an amazing source of support for me. I don’t know what I would do without them.

“You go in there and meet new people and this sounds strange but you actually get asked how you are as well as the children.

“It’s really helped me regain a bit of my identity, now I know I’m not alone.”

The deadline to enter the Deep RiverRock Belfast City Half Marathon is September 2.

To sign up in aid of Mencap, visit mencapbigstepforward.org, email fundraising.ni@mencap.org.uk or call 028 9069 1351.