Noah was born on 30th January 2009 after a fairly unremarkable pregnancy and a fairly normal delivery (even with the cord round his neck!)
He failed his newborn hearing screening test but his parents, Matt and Sarah, and the examiner put it down to congestion and arranged a retest. Following two retests and still no response in his left ear, they were referred to the audiology department.
In the meantime, when he was about 3 weeks old, Sarah received a call from Kingston hospital who are participating in the Sparks-funded research. ‘They informed me that they had discovered I had an infection in pregnancy and they needed to see if I had passed it to Noah,’ explains Sarah. ‘With much hilarity we finally captured a urine sample and rushed it to the hospital as they said we only had a small window in which to test for the virus.’
But the laughter was initially short lived. ‘A few days later, I received a call to say that Noah had indeed contracted the virus but that he showed no signs of being affected and would probably be fine. I happened to mention the failed hearing tests and they put two and two together and called us in’ Sarah recalls. ‘It was Friday and we had to wait till the following week for our appointment – in the meantime we went online and read about what our future might hold. We spent a very tearful weekend reading about what Noah’s life might be like as a child with cCMV (congential cytomegalovirus) and we were devastated.’ cCMV can cause mild to severe hearing loss and can be treated in the first months of life.
That all seems like a lifetime ago – following a meeting with Dr. Sue Luck, Noah was admitted to Kingston Hospital and from the age of 4 weeks until 10 weeks old he received twice daily intravenous Ganciclovir, an antiviral drug.
He has regular check-ups and all seems to be going well – his eyes are clear of CMV and, apart from an occasional bout of glue ear which causes new challenges, his hearing seems unchanged. Mostly it’s not getting in the way and he is developing very well. His speech is good and he is picking up reading faster than average and developmentally, specialists feel he is ahead of the game so Matt and Sarah are keeping their fingers crossed that the treatment worked.
‘Noah is a happy, loving and enthusiastic little boy who is eager to learn so it seems we got off lightly in terms of CMV’ says Sarah. ‘Many other families I’ve chatted to have experienced more severe symptoms, including greater levels of hearing loss or hearing loss getting worse over time. I also know that a lot of families don’t get the opportunity to consider antiviral treatment for their baby because they just don’t get a diagnosis in time. We feel very grateful that Noah had the opportunity for treatment that could have preserved his hearing. We hope doctors will use the findings of the research funded by Sparks to give more children born with CMV this opportunity in future.’
Thank you so much for your support of Sparks, helping to fund more research projects that could help children like Noah. We really appreciate your support.
Caroline’s third daughter, Zoe, was diagnosed with cerebral palsy the day before her second birthday.
Zoe was born three months premature, weighing just 2lb 2oz. Caroline tells us about their inspiring journey and how Sparks helps them keep the faith.
“When Zoe was born, she was the length of my husband’s watch. A face cloth completely covered her, and her whole hand was my thumb nail. As much as she was vulnerable, I also thought ‘wow, this is a real miracle’.”
Up until the age of two, she met all her milestones so we weren’t too worried, but I could tell there were balance issues and things like that. People would tell me ‘no, no, it’s just because she’s little, you’re nervous’.
The day before Zoe’s second birthday, we went for an appointment and were told she had cerebral palsy – completely out of the blue. We had everyone waiting at home for a birthday party. I’m ashamed to say that I had no previous knowledge of any disability.
I visualised the worst: wheelchair, dribbling, not being able to stand, walk or talk. As we walked to the car, I remember my husband saying, ‘I’m telling you now she is going to walk’. I was so sad looking down at her little red patent shoes thinking, ‘she is never goingto walk in those’.
I felt like windows of opportunity were closing for my daughter, but I didn’t want to be negative with it, and that’s been our attitude ever since. And that’s what Zoe does. I couldn’t ask for a better daughter, or for a better person to be in my life. She amazes me really.
She’s had a massive amount of knock-backs, but she pushes the boundaries and does as much as she can. We were launched into a world we didn’t expect to be in, but are now proud to be part of. We’ve met lots of families who want the best for their kids.
“The world is difficult for kids like this. That’s why it’s nice to have Sparks there.”
Having a disabled child is a rollercoaster that bonds families. Every milestone Zoe met was a celebration within the family. And we have an amazing extended family that inspired us to keep going. My father has tried to climb the peaks for charity, aged 72. Zoe’s sisters are great, they look out for each other. They are all very unique and we celebrate them all.
Sparks came into our lives when Zoe was going from appointment to appointment. We spoke to Sparks research specialists and met people who have done amazing things.
When we did the Sparks fashion show in 2006, she had a beautiful dress but big Perspex splints with Velcro all round them. So you had this beautiful angelic child, this gorgeous sparkly dress and then these big splints. Zoe has a good attitude and is up for trying anything. We do laugh at some things, like funny boots and funny shoes and things. It’s not easy but we get through together.”
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.”
“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.”
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.”
Life with sickle cell disease
Four year old Jacob was diagnosed with sickle cell disease at birth. His mum Sheree tells us about the impact this has had on their lives and why she is so keen to raise awareness and support for Sparks' research.
"I was 41 when I had Jacob, and as an older mum I thought I would get tested for Downs Syndrome and other conditions, just in case. When it came back that my baby had sickle cell disease, I thought it had to be wrong."
Sickle cell crises
"Jacob had his first "crisis" when he was a baby, which is a painful attack caused by sickle cell. At first it was a shock, but now I'm much better at spotting them. I can tell if he's about to have a mini crisis as he looks jaundiced, his eyes go yellow and his hands and feet begin to swell. I know how to feel for his spleen in case it is enlarged, and if it gets to severe then I will take him to hospital. The pain can be excruciating.
Despite everything, he's so good with taking his medicine, and half the time reminds me of what he needs. He takes penicillin daily to boost his low immune system and also has regular check ups and brain scans. Sickle cell patients run a higher risk of suffering a stroke, so early risk detection is important.
One of my biggest worries as Jacob starts school is making sure that he is taken care of. He must never be put at risk of promting a crisis by getting too hot, too cold or doing strenuous activity, which means he can miss out. I want him to be able to do normal things like running, football or swimming. I am fighting to get him access to the warmer hydropool so that he can do more than just watch his sister Savannah enjoy the water. Last year we managed to get him out in the snow for the first time with special boots and a snow suit. Usually he only gets to watch his friends from the window."
Giving something back
"Jacob has given me great determination to help him and other sufferers. All the times he has been in hospital he has been so brave - he really inspires me. It's meant a lot to me to be able to give something back, and I have done all kinds of fundraising from running marathons to holding car boot sales. Before Jacob, I would never have thought about doing any of these things.
It's important to talk about your feelings to other people - even if it still makes you cry every time. Talking to other families has helped me understand more about the condition and how to cope with the illness.
My life is dedicated to my children. My daughter Savannah is a carrier of the sickle cell gene like me, but I am determined to raise awareness about the condition. I hope that I can help make a difference.
Sparks research into new therapies for sickle cell is invaluable. It is a lifelong condition, and improving methods of treatment would greatly enhance the quality of life for children like Jacob. I am so grateful to Sparks for funding this vital research."
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