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Why we want to support other mums in crisis

 

When your child is fighting for their life in hospital, the support of staff and other parents can be a lifeline. Mothers Shauna McDevitt and Annie Mitchell, both from Londonderry, tell Lisa Smyth about watching their daughters suffer serious illness and how a parents’ group at Altnagelvin helped them.

'The group allows parents of children with complex needs to talk to each other'

Annie Mitchell (27) lives in Londonderry with her husband Jonny (28), and their children Ellie (8), Brooke (6), Lexie (4) and Ruby (2). She says:

My pregnancy was straightforward up until 21 weeks when I had a bleed. I was expecting twins and I was put on bed rest and told that if the babies came before 24 weeks they wouldn't be viable.

There weren't any neonatal cots in Northern Ireland so I was transferred to the Rotunda Hospital in Dublin.

It was really scary as we didn't know what was going to happen and the whole way down the blue lights were flashing.

I was monitored really closely and scanned every hour, and when the bleeding got worse I was being scanned every 10 minutes.

Basically, the longer the girls stayed in me the better - but just after 24 weeks it got to the stage when my placenta started to come away and I was straight down to surgery.

It was horrendous, it was so scary - one minute I was sitting in bed and the next I was in theatre.

They forgot to put up the screen so I got to see everything.

They told me they didn't think twin one, who was Ruby, had a chance of surviving but that twin two, Lily, would do better.

Ruby was 630g when she was born and Lily weighed 633g (both 1.39lb).

As it turned out, Ruby survived and Lily passed away when she was six days old. She contracted septicaemia and all her wee organs shut down on her.

I had the three other girls at home and I wanted to get home and tell them what had happened, but the hospital asked me to stay there because they didn't think Ruby was going to survive either.

But she hung on. So we went up home and brought Lily home with us and had her funeral before travelling back down to Ruby.

It was so hard but we had to keep going.

It's been a real roller coaster with Ruby and we've spent so much time in Altnagelvin.

We thought we were going to lose her again in March as they thought she had a viral infection, but it turned out to be juvenile idiopathic arthritis.

She was put on a ventilator and the doctors spoke to us about turning off the machine but I just couldn't do it.

My head was all over the place - it was crazy.

Her heart rate dropped really low at one point - it was down to 30 and it could have stopped at any time and that's when they asked us about switching off the machine.

The way I saw it was if her heart stopped then that was her giving up herself but I couldn't make that decision for her.

Miraculously, she survived. She has been through so much - she's had septicaemia three times and she had two bleeds on her brain.

She went to have laser surgery on her eyes and her windpipe completely collapsed. She has chronic lung disease and is ventilated and on oxygen all the time.

She spent her first birthday in Altnagelvin and the staff were amazing. You're not allowed balloons on the ward but they made an exception for Ruby and the play specialist decorated her room that morning.

I can't say enough about how good the staff at Altnagelvin were to her. It's so emotional and mentally draining when your child is so seriously ill, especially when you have other children at home.

When I wasn't able to be at the hospital, one of the nurses would give her one-to-one care.

Ruby can't be on her own at all, we have to have two people at home with her at all times, which means we can't work.

If her trachea tube gets blocked it is an emergency because she can't breathe and you need two people to get it sorted.

It's happened quite a few times at home and it's very upsetting because you don't have long to get it fixed.

It's like she's choking - it's horrific to watch and see her struggling to breathe and the look on her wee face, it must be a horrendous feeling for her.

We would like to get her off the ventilator but that's going to take quite a bit of time before we're able to - it might take years.

But despite everything, Ruby is such a wee character.

It's been such a roller coaster, I was able to hold Lily when they turned off the life support but I wasn't able to hold Ruby until she was four-and-a-half weeks old.

She was so tiny and she had all these leads attached to her - you're also scared to touch them because they're so tiny and they look so fragile.

It was such a great feeling to get Ruby home.

We didn't tell the girls beforehand that she'd been discharged so they were very excited when they realised she wasn't going back to the hospital.

Of course, we have to be very careful with Ruby because she can become very ill very quickly.

If people are sick we keep her away from them and the girls know if they aren't well that they're not to go into Ruby's room.

The staff at Altnagelvin have always been amazing throughout - the doctors, nurses, physiotherapists, play therapists, they're all brilliant.

You see the staff all the time and they almost become like family - it's not even like they are the medical team anymore.

I also think it is so important for parents of children with complex medical needs to be able to talk to other parents and that's why I think the parents' group is crucial.

When Ruby was in the hospital she was in her own room so we didn't really get to talk to any of the other parents, but knowing there is a group you can contact is really helpful.

You just never know when you're going to be in that situation - it could happen at any time. Spending any length of time in a children's ward is hard and it was just as hard with the other girls as it was with Ruby - it doesn't matter whether it's one day or 15 months.

I've been in for one day with my other children and it's not pleasant in any situation, so it is really nice to have other parents to talk to and to know you're not alone."

'The nurses on the ward were absolutely incredible and they became like friends'

Shauna McDevitt (40), a GP receptionist, lives in Culmore with her businessman husband, Jason (41), and their two children, Abbie (13) and Hannah (10). She says:

Our journey with wards six and 16 at Altnagelvin started on November 25, 2008, when Hannah was five days old.

We had no idea anything was wrong immediately after she was born - everything seemed fine. She slept around the clock and fed really well - she was a dream baby.

Then she developed jaundice and we weren't worried to begin with, but the real warning sign came when she did a poo that was completely white.

I didn't know it at the time but it's the bile that gives your poo its colour, so that's why the poo was white - because the bile wasn't getting through.

I thought it was because she might be lactose-intolerant so I mentioned it to the midwife and she said Hannah needed to go to Altnagelvin.

At that stage, everything suggested that she had a liver disease called biliary atresia, but they said they wouldn't know until they did a procedure called the Kasai procedure.

Biliary atresia is a condition in which the bile flow from the liver to the gallbladder is blocked, meaning the bile is trapped inside the liver.

This causes damage and scarring of the liver cells and leads to liver failure, so it's extremely dangerous.

When Hannah was born she weighed 9lb 6oz and no-one could believe it because they said she didn't look big enough.

They kept weighing her and we know now that the reason she weighed so much was that there was a build-up of bile in her liver and it was weighing her down.

Jason and I took it in turns to stay with Hannah in the hospital and she was there for two weeks before a bed became available at Birmingham Children's Hospital, which is where she needed to go for specialist treatment.

I'll never forget it. It was December 13 and it was the year that Eoghan Quigg (from Dungiven) was in the X Factor.

All the mums in the ward at Birmingham were sitting around watching the X Factor final and the Guildhall (in Londonderry) came up on the television and I just burst into tears.

I'm sure they all thought I was mad but I just wanted us to be back home.

Hannah went for her surgery on December 23 and, because Abbie was just three at the time, I went home to spend Christmas with her and Jason stayed with Hannah.

It wasn't how we imagined her first Christmas would be, but we just had to do it.

Before I left the hospital before Christmas, the consultant told me that when I came back Hannah would be pure white but when I returned the day after Boxing Day she looked even more yellow.

I said to him that I could see the procedure hadn't worked to address the problem - it was obvious it hadn't because the jaundice was even worse than before the procedure.

That meant the only treatment left was a liver transplant.

Little did I realise that, when we got home from Birmingham, for the next year I would practically be living in ward six in Altnagelvin.

Hannah's liver was deteriorating quickly and it would be fair to say she spent more time on the ward than at home.

She wasn't feeding, she wasn't putting on weight, basically the bile wasn't going anywhere and there was no room for her tummy.

Eventually the nurses in the ward told us we had to stay at home at night, that they were looking after Hannah and we weren't to worry.

It was actually a bit of a relief because we wouldn't have left her side if they hadn't told us and in those days all you had was a chair beside the cot so we weren't really getting any sleep.

The nurses on the ward were absolutely incredible and they became more like friends. I actually started to call them aunties.

Hannah actually spent three months on the ward until she was allowed home but even then she was back in the hospital a few days later.

I had put on the machine for her night feed and she was in her cot when she did a funny cough, so I jumped up and ran round to her. She was grey and her arms were limp.

We had open access to ward six so we took her straight up but by the next morning she was sitting up and playing.

When the doctor came around I apologised for overreacting but he said I was right to bring her in, that her bloods were all over the place.

Over the next 24 hours, she became totally unresponsive and her heart rate and blood pressure were through the roof.

One of the nurses told me that Jason and I needed to be there that night and it was then that I thought she just couldn't do it anymore and I thought that I couldn't do it anymore. Enough was enough.

I knew we were going back to Birmingham and we wouldn't be coming back until she had a liver transplant.

One morning I was woken in the early hours by a nurse who said they'd found a liver but then it turned out that it wasn't suitable. It was devastating.

Luckily, they found another liver soon enough and Hannah had her transplant on November 3, 2009.

It was absolutely amazing - she recovered so well and within a few hours she had rosy cheeks for the first time in her life.

We were finally able to get on with our lives, but then during the summer Abbie started to feel unwell and she was diagnosed with appendicitis.

The four days we spent on the ward with Abbie just made me wonder how I got through it all when Hannah was sick.

Looking back, I will never be able to thank the staff from the ward enough for keeping Hannah alive until her liver came.

That's why I'm joining the parents' group - the ladies and gentlemen on the ward work extremely hard every day and if there is anything I can do to help them in saving more lives of children, then I will.

I've cried many tears on that ward and it's the least that I can do.

When your child is unwell and in hospital, it is an extremely difficult time for everyone and we want to be able to do whatever we can to help the staff, the children and the mums and dads."

To find out more about the fundraising and support being provided by the parents of children spending time as inpatients at Altnagelvin Hospital, visit the Facebook page of Altnagelvin Hospital children's wards six and 16

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