The parents of a nine-week-old baby girl, who has been suffering hundreds of seizures daily since being born, are preparing to travel to Alder Hey Children’s Hospital in Liverpool in a bid to find answers and the hope of giving her a better quality of life.
Now Beverley McCann and her partner Lewis McInnes have launched a fundraising drive as they try to do their best for their precious daughter, Eden.
The couple, from Armagh, are also appealing for prayerful support as they continue on what has been a truly emotional journey so far with an uncertain road lying ahead.
“We’re so scared of losing her,” said Beverley, who bravely spoke to Armagh I this week as she recalled all of the challenges the family have had to face in such a very short time.
Those challenges have included a worrying revelation even before Eden was born on September 9, with the results of a private scan detecting an ovarian cyst.
“I was seen in Craigavon, and they confirmed it,” said Beverley. “I was referred to foetal medicine in Belfast, and they actually thought it was something else. It’s some kind of malformation they thought it was, a connection with her bowel and bladder, so they actually admitted me into the Royal for about seven or eight days before I had Eden, to keep an eye on me and keep an eye on baby.
“They kept me there and I was brought in to have a caesarian section then on the basis they were worried about this malformation. When she was born she was taken to neo-natal straight away and they did a scan on her and realised then it was a large ovarian cyst.”
It was what would emerge in the following days that heightened the devoted parents’ concerns – and prompted Beverley to urge others to “trust their gut instincts” and seek a second opinion if they believe something is just not right.
“We were told the ovarian cyst wasn’t much to worry about and that she would be seen as an outpatient in the Royal Children’s Hospital in Belfast six weeks after she was born,” explained Beverley.
“We were released actually after four days in the Royal Maternity and I went home with her. Then I noticed her doing something strange with her face, which kind of looked like when a wee baby drinks its milk, sometimes it pulls wee faces. But this was going on and on. She was doing this constantly and I mentioned it to my midwife and she did notice and said take her over to Craigavon.
“Eden had been released from the Royal on the Saturday and this was the Thursday and I took her to Craigavon Hospital. Craigavon had her for 24 hours. I stayed with her and they told me the next morning that there was nothing wrong with Eden. They did see her making the facial movement, which is typical of kind of like a stroke. When you take a stroke, your face droops at one side and it was a bit like that; one of her eyes closes and one of her eyes deviates up in.
“They saw her doing that and the doctor was actually quite ignorant to me at Craigavon and said to me, ‘Mum, I think you’re just a wee bit tired and you’re over-worrying’. I showed her videos of Eden doing this and she says, ‘can you tell me in this video what you see wrong with the child?’.
“I was actually very upset by that because I do have an understanding. This is my fourth child and my first child was sick as well. He had open heart surgery, so I do have a wee bit of medical background knowledge as well. I felt like I was being patronised a wee bit.
“I went home with her and she was still doing this facial thing and she was doing it maybe about 10 times in a minute. She was breastfeeding and she couldn’t even feed properly. It was the next day, I had my midwife in and I said to her, ‘can you sit with me here for a wee hour and just watch this child because I think something’s wrong with her?’.
“She had already seen Eden, of course, and said to me about Craigavon, but she sat with me for an hour and watched her and said, ‘look, Beverley, no, I think you need to take her to the Royal now. If they’re not listening, take her down to the Royal’.
“That was a Saturday and I took her down to the Royal, went to A&E with her and they saw her right and quick. The doctor in there straight away said to me there’s something not right, we don’t know 100% what it is, but we do need to do a few wee tests on her.
“They did all the normal kind of tests with a baby; they did an ECG to see if her heart was okay, they did a wee ultrasound scan of her brain to begin with and they didn’t find anything worth telling us what was going on.
“They put her in the front of the bays in A&E because she was seizing back-to-back at this stage. I did mention to them at Craigavon that I think Eden’s having seizures and the doctor stopped me in my tracks and said, ‘no, don’t use that terminology, your baby is not having seizures’. Within half an hour in the Royal they told me she was most definitely having seizures and that it looked very typical of epilepsy.
“Her wee heart rate was really, really high. It was hitting up to about 250, 260, and her oxygen was dropping dramatically.
“She just was very, very poorly for a few days and she ended up going into intensive care because they couldn’t get on track with these seizures. They were just happening and she was very flat.”
Eden spent almost a week in intensive care before being stabilised.
She remains in the Royal in Belfast, but the next step for the baby girl will be Alder Hey Children’s Hospital in Liverpool, to try to get to the bottom of what is happening and, more importantly, why it is happening and what then can be done.
“She’s had an MRI and it’s normal,” explained Beverley. “She’s had a genetic test and me and her dad have had that done also and everything came back normal. She has had EEGs, the wee leads on the brain, and they’re showing epileptic seizures, so it is epilepsy, but we can’t get to the reasons why she’s having epilepsy.
“The next move now really is she’s had an urgent referral to Alder Hey and we’re hoping that happens now in the next few weeks.
“With the ovarian cyst, they did her markers on that to see if there’s any tumour markers really and that’s extremely high too, so they are looking into this to see is it potentially having an effect on the brain as well. They’re not seeing anything on these scans, so they’re wondering could that be a trigger.
“The cyst has grown from she’s been born instead of shrinking, like they originally said, so it’s grown an extra two centimetres, so it’s eight centimetres big on her wee ovary.
“The next move now is Alder Hey and hopefully that will happen. We’re sitting at the moment where everything’s up in the air. We don’t know exactly what is going on with Eden, but she is very, very poorly and she’s having, still now to this day, hundreds of seizures per day.
“There’s a surgical procedure they can do over there to remove a little part of Eden’s brain that’s firing off. That’s one of the things they wanted her over for. They also want her over there for a 3T scan, which they can’t do in Belfast, that normally would take a higher resolution.
“That’s why they wanted us to go to Alder Hey. They want that done and then with the potential of having that surgery, but we also want this cyst further investigated, because sometimes there’s a link between that and seizures as well.
Beverley and Lewis with baby Eden.
“They will do further investigations with Eden, with the potential of either surgery or to figure out why she’s having these seizures or maybe find the answers that the Royal can’t at the moment.”
Aside from the worry, Beverley – who has three other children, Tyler, 14, Ava, 13, and nine-year-old Jaxon – says everything has been having a massive impact on the family as a whole.
“Having had a caesarian, I was travelling up and down with my dad in the beginning, and my partner Lewis is staying with Eden 100% of the time, where I have to come down the road and see the older ones and get things done here,” she said. “As time’s gone on, I’ve been able to drive again, but it’s having a huge, huge effect, because we’re travelling up and down.
“Having had a section I’ve had to recover in hospital. Some people might think that’s a good thing, but it’s a children’s hospital, because they’re only dealing with Eden, where I’ve been sitting on a hard seat trying to recover, my back’s killing me, my body’s sore. Eden’s daddy Lewis has lost over a stone in the last month of being there.
“My parents are obviously extremely worried too. The whole family is. Everybody’s worried and living on eggshells at the moment because we’re so scared of losing her.”
Beverley and Lewis started their fundraising page to help ease the burden they are experiencing as they wait anxiously by Eden’s side in hospital in Belfast, as well as the expenses travelling to Liverpool will incur and any potential adaptations at home which may be required in the future depending on their baby daughter’s diagnosis.
While some help might be available to the family, they know it will not come close to covering their day-to-day needs now and into the future.
“As a family and parents with three other children at home this has taken a huge financial strain on us,” added Beverley.
“It’s been really, really hard. The cost of fuel is through the roof and I’m driving down the road, two to three days a week, just depending on what’s needed done at home, who needs me at home or if I’ve appointments. That’s the biggest financial strain alongside even feeding ourselves down there.
“We don’t want to touch what we have fundraised so far because we’re thinking more of when we go to Liverpool. It’s probably going to be a bigger financial strain again because we’re travelling away from home. I know from taking my eldest son to Birmingham for surgery that when you’re over you have to cover the cost of your living. You do get normally somewhere to stay, but there’s your food every day, and whatever else you have to do when you’re over there.
Beverley with baby daughter, Eden.
“Alongside that we need to think of Eden’s future as well, anything we can maybe even help her with when we come back home if she is diagnosed as having epileptic seizures. They can either cure her there of this or she could have epilepsy for the rest of her life and they might only be able to give her a better quality of life. So we’re thinking ahead of what we can do in the house to make it safer for her as well.”
To date, the family have been overwhelmed with – and extremely grateful for – the support shown.
And in addition to donations via the fundraising page, prayer, they believe, is equally important and appreciated.
“The support has been really, really good,” added Beverley. “I would have had a bit of a TikTok following from a few years ago and a lot of people from there have been really, really good, and a lot of people know us personally as well. I used to have a business in the town and people would have known me from that and they’ve all kindly donated.
“Friends and family have been amazing. It’s been fantastic so far and I am extremely thankful to everybody.
“I would love to reach out for more people to pray as well, because that’s something that means more to us than anything else. No matter what religion or whatever else, a lot of prayers would be appreciated at the moment.”
As they continue their fight for a better future for baby Eden and seek those much-needed answers, Beverley is also urging other parents not to take no for an answer when it comes to their own child.
“If your gut instinct is telling you there’s something wrong with your child, just make sure that you go on your gut, because if we had gone home and listened to what we were told in Craigavon, we don’t know where Eden might be today,” she said.
“It’s something that’s very scary, if we thought about it too much, because Eden did end up in intensive care, more or less days after that initial appointment in Craigavon. It’s scary to think what could have been.”
If you would like to support the family through the GoFundMe page, you can make a donation here.
