Improving the Quality of Life for Children

When Charlotte was told she was expecting twins her life changed dramatically. Having her twins, Lily and Grace, at 30 weeks meant they were in hospital for seven weeks. Here Charlotte shares with us her experience of a twin pregnancy and how the girls are doing now. 

“Hearing for the first time that I was to have twins was a really big shock. My mum and aunt came with me for my scan and they saw it even before I did. I just saw their shocked faces and was so worried that something was wrong with my baby. When I turned to look at the scan though, I saw that there were two perfectly clear babies on the screen and we all just started crying. My husband is in the Army and wasn’t around for the scan so afterwards I sent him the image of our babies – he actually thought that I had sent it to him twice by mistake, he couldn’t believe that we were having twins!

Being pregnant with twins you get a lot of medical attention; I had more scans, I had my blood pressure taken more regularly and I had a midwife who specialised in twin pregnancies, she really looked after me. Carrying twins is quite a surreal experience as the terminology surrounding pregnancy always focuses on one baby and even I found myself saying ‘baby’ rather than ‘babies’. Attending the twin clinic was wonderful and it really helped me understand my pregnancy. Twin pregnancies are high risk and that meant that I was quite worried during my own. Having the twin clinic really reassured me; in fact I would have happily gone in everyday to check the girls were okay.”

Premature twins

“I went into labour early and was taken to hospital where they put me on a drip which slowed down the process. This meant the doctors were able to give the girls steroids to help develop their lungs. I was taken off the drip after three days and my labour started again. The girls were born prematurely, at 30 weeks, by caesarean section both weighing 3lbs 9oz. They just seemed so tiny. Being premature, they weren’t able to breathe on their own so they were taken straight to the neonatal intensive care unit (NICU). I found this incredibly hard as I barely spent any time with them before they were taken to the NICU.

Lily and Grace were in hospital for seven weeks. As well as regular brain and heart scans, they both had blood transfusions and lumbar punctures. Grace was also suffering from necrotizing enterocolitis, a gastrointestinal disease which causes infection and inflammation that can lead to varying degrees of destruction of the bowel. She had a long line fitted to provide her with nutrients as she was ‘nil by mouth’. Thankfully, she fully recovered once she finished her course of antibiotics.

I was with the girls for each of these procedures. It was a very traumatic time for us all. I think of all the time in hospital Christmas was the worst day for us, we really wanted the girls to be at home but this was impossible and instead they woke up on their own in a hospital incubator. I’m looking forward to giving them their first proper Christmas at home this year.

Bringing the girls home

“Bringing them home was pretty scary if I’m honest. Suddenly I really felt like a mum. Life with twins is very different from what is used to be – you never have time to stop. Getting the girls out of the house can be tricky, the amount of stuff that I need to take means I have barely any room to carry anything for myself. Even a quick trip to the shops can take ages as we constantly get stopped by people who want to see the girls.

The girls are now completely signed off from the hospital and apart from being a little behind in terms of development they are very healthy babies. To look at them you wouldn’t think they were born prematurely, they are the same size as babies of their age.

Having twins means you get everything twice – you have two babies to love and you get twice the amount of cuddles. Grace is definitely the cheeky one, whilst Lily is very laid back. They do always want to be together, most of the time if they cry it’s because they have woken up without the other one there with them.

It’s so great to hear that Sparks’ researchers are trying to prevent the high rates of twins being born prematurely. If the girls had been born at full term, it would have prevented them going through everything they did. Having twins is an amazing thing and I can’t wait to see what Lily and Grace’s future holds.”

Links:

• http://www.sparks.org.uk

Jade's Story

When Jade was four years old, she was burnt by a cup of coffee. This led to her undergoing numerous treatments, including wearing a pressure garment, for four years. Jade’s mum Nicky tells us about Jade’s story and explains how the Sparks research looking into the treatment of burns could help other children.

“Jade was four at the time and was at my auntie’s house when I got a call to tell me she had been burnt and that she was being taken to hospital. Jade had been in the kitchen when she had accidentally picked up a cup of coffee which had spilt down her. I rushed to the hospital where Jade was being bandaged and treated for the burns. We were told Jade wouldn’t be admitted but that we would need to come back the next day to get her bandages changed.

We went back to the hospital for the next few days and had Jade’s bandages changed. On the third day of going, the consultant was carrying out his rounds as normal but when he looked at Jade’s burns he explained to me that they were deeper than they had originally thought. Jade was referred to the Queen Victoria hospital in West Sussex, who deal specifically with the treatment of burns.

“When we arrived at the Queen Victoria, Jade was almost immediately given morphine and her burns were photographed.”

A couple of days later she underwent a skin graft and then stayed in hospital for a total of ten days, with me staying in the parent’s annexe. This was a particularly hard time for us, it was incredibly difficult to see my daughter in such pain and having to deal with the severity of the burns, which we had originally thought were mostly superficial, was very worrying.”

Wearing a pressure garment

“About a month after Jade’s skin graft we had an appointment with the occupational therapist who told me that Jade would have to wear a pressure garment.

“A pressure garment is a skin coloured bodysuit which compresses the burn scars to make them softer, paler and flatter.”

I have to admit when I first saw the pressure garment I was shocked that Jade would have to wear this 24 hours a day, seven days a week.

Along with the pressure garment I needed to massage Jade’s burns with a special cream three times a day. Jade and I would get up early to do this before school, then again when she got home and finally just before she went to bed.

I think wearing the pressure garment was one of the hardest parts of Jade being burnt. When we were out in public, people would often stare at it and wonder why, particularly in summer, she had to wear this. Jade was too little to notice this but it was something which particularly upset me. I don’t think Jade could have been better at coping though, she never once complained about wearing the pressure garment or being too hot in it. This was a great comfort to me and just showed what a headstrong little girl Jade was and still continues to be.

Jade wore the pressure garment for four years; her scars have now matured and healed to a natural skin colour so she no longer needs to wear the garment. The burns are still noticeable but for Jade it doesn’t really seem to bother her. When children at her school ask her about the burns she is happy to tell them how she got them. She really enjoys swimming and a lot of other sports like badminton and horse riding and she is happy to throw herself into these, it hasn’t changed her or her confidence at all. She also attends a camp with children from the burns unit at Queen Victoria and this has been a great support both to her and me, as I have met the parents of the children with burns like Jades. Just knowing that others have been through what we have has been of comfort to me.”

Changing the future for children like Jade

“Knowing about the Sparks research which looks to treat burns in a better more effective way is really amazing, particularly after everything Jade and I have been through. It would have made a big difference to Jade, not having to undergo the skin graft which was quite a traumatic procedure for her at such a young age. Having a simpler, more effective treatment would hopefully mean children could recover more quickly and get back to their normal lives faster.

It’s great to know Sparks are working hard to improve treatment for children, any change that could me made, even for just one child, could really make a difference.

 ”I’m so pleased to support Sparks’ mission and hope sharing our story can give hope to others.” 

Links:

• Read more about Sparks' research to improve treatment of burns