Two special sisters

Two sisters born with the same condition, as told by their mum Sam.

Two children with a rare condition

When Amy was born we were told she was only the fourth person in the world to be born with this condition, chronic inflammatory demyelinating polyneuropathy (CIDP). It’s a more common in older children but for babies to be born with it is really rare. It’s not genetic, so nobody expected our second child to be at risk. We’ve been told we’re the only people in the world to have two babies born with it. It’s unheard of.

Amy

I needed an emergency caesarean and when they got Amy out she wasn’t breathing and I knew something was wrong because she didn’t cry. I remember Darren bursting into tears and saying ‘I think she’s dead’. The doctors were resuscitating her for eight and half minutes. They said they would have had to stop trying to revive her if it had got to ten minutes. 

Amy was floppy and couldn’t move anything but her eyes. She was taken straight to an incubator in the special care baby unit and kept in isolation for 24 hours while they did tests. I was scared to see her because I knew the reality would hit that we couldn’t take her home. You never think something like this will happen to your baby. It’s such a shock. 

Coming to GOSH

Our local hospital realised Amy needed specialist help and we were transferred to Great Ormond Street Hospital (GOSH) when Amy was four weeks old. I’d heard of GOSH as somewhere where the most seriously ill children go and you never imagine you own child will have to go there. When we walked into the reception I was filled with anxiety.

I quickly discovered that the care at GOSH is phenomenal, and realised we were in the best place possible for Amy. Even at this incredibly tough time, I started to feel at ease and hopeful.

At the time, we were told that Amy was unlikely to reach her first birthday, and could remain completely paralysed. We were utterly crushed, and devastated that we hadn’t even been able to take her home. We’d bought a child into the world and we didn’t know if she would live.

Getting a diagnosis

It’s only somewhere so specialist like GOSH that you can find a doctor who’s able to recognise such a rare condition. Amy was seen by Dr Adnan Manzur, who thought it might be chronic inflammatory demyelinating polyneuropathy (CIDP). He ran tests for the condition but decided to start the immunoglobulin treatment straight away.

We got Amy’s diagnosis about four months later and Dr Manzur was right. It’s thanks to his expertise that Amy survived and recovered but at the time we didn’t know what the outcome would be.

Amy moves for the first time

One of the happiest moments of my life was when Amy moved for the first time. She was six weeks old and it was during a physiotherapy session at home. I thought my eyes were playing tricks on me but then she did it again, just the slightest movement in her leg. I just burst into tears.

From then on, every time Amy did something new it was like she was proving those early predictions wrong.

On Christmas day Amy took her first steps, which was the best Christmas present we could have hoped for. She was 15 months old. Amy’s grandfather had a tin of chocolates and she wanted one. In front of everyone she took her first steps. It was amazing and made our Christmas.

Mia’s birth

With Mia it was very different. To hear her cry when she was born was absolutely amazing. They weighed her and then brought her over to me. It was everything you imagine it to be, it was perfect.

When Mia was a week old, I noticed that she couldn’t move her legs or feet at all. We went to the GP and then to our local hospital but, understandably, no-one had any experience of the condition. At three weeks old, Mia was referred to GOSH for tests, which showed that she had the same condition as Amy.

We were fortunate that Mia wasn’t as severe as Amy, and as soon as Mia started treatment she began moving her legs again.

Christmas at GOSH

Mia was only three weeks old when she was admitted to GOSH. It was early December and it would have been all too easy to forget how everyone in the outside world was building up to Christmas, had it not been for everyone in the hospital getting into the festive spirit. When you have a child or close relative in hospital it’s so easy to fall into a “bubble”, and forget the outside world exists.

I would leave her room and see all these paper stockings with messages on them for  and families, as part of the Stocking Appeal. I would walk to the kitchen and read them while the kettle was boiling. It brought me back to the outside world and got me excited for Christmas.

What Christmas means to Amy and Mia

Other than presents, Amy and Mia’s favourite part of Christmas is just being at home with the family. This year we’ve spent so much time together, and when I asked them what they enjoyed the most about lockdown they said it was all of us being together and having that time together. 

Christmas is such a special time of year because school has finished, we have that time off work and we can just enjoy that quality time together. 

Recovery

Amy has made a full recovery and it looks like Mia will too.

Doctors say that if the girls were to relapse, the first sign would be tingling hands and feet. It’s something we keep an eye on and I suppose I worry more than the average parent.

Amy is now nine years old and she’s into everything. She loves singing and dancing and doing little shows for us. She’s so energetic, she’s constantly on the move. Mia’s almost four and she’s very cheeky.

Advice to other parents

I would say to other parents to try to stay strong, to ask all the questions you need, even the ones you fear are silly, the doctors know you are trying to be the best parent you can be. Also that it’s easy to forget to care for yourself, so make sure you have a break.

About GOSH

Without the knowledge and expertise of the great doctors at GOSH, we might have lost Amy. I can’t thank them enough for what they have done for both our daughters. Without the specialists at GOSH, we might not have our little family. We will be forever thankful to them. The consultants really support us as parents, as well as caring for our girls. They listen to how we feel and really put us at ease. I never feel silly about asking any questions or voicing any concern, however seemingly small. Once you have children at GOSH you want to do anything you can to support the charity.

Find out more about GOSH Children's Charity Home for Christmas campaign