Scarlett’s Story | Julia's House

Despite having faced some major challenges already in her short life, eighteen month-old Scarlett is the most happy and content child you could wish to meet. She was born with the genetic condition Down’s Syndrome, but after her birth there was an added complication, as her mum, Stephanie explains:

“We were told Scarlett had a small hole in her heart which would require surgery, but it actually turned out to be three quite large ones. She also had one long valve in her heart instead of two, which would have to be split into two. She was born six and a half weeks early and weighed just 3lb 1oz. Scarlett was taken to the hospital’s Neonatal Intensive Care Unit (NICU) and was put on oxygen straight away, as due to her prematurity her lungs hadn’t developed enough. Whilst there she had to get to grips with feeding through a nasogastric (NG) tube as she was unable to suckle, and we were told she’d have to put on weight before we’d be able to take her home.

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Scarlett remained in NICU for 85 days. It was really tough because we also had to look after her big sister, seven year-old Emily. We were in the grip of the COVID pandemic, so nobody apart from me and Nathan were allowed to see Scarlett during that time. Although it was hard, the NICU staff at the hospital were so lovely.

Scarlett was due to come home on Christmas Eve 2021, but unfortunately she caught a bug and we were told she’d have to stay in. Emily was allowed to visit and meet her sister for the first time on Boxing Day, which was lovely, and such a special moment. We think Emily may be on the spectrum, and it’s very hard to explain to her what’s going on with Scarlett.

“Scarlett recovered from the bug and was eventually able to come home, but her oxygen levels kept dropping. She was turning purple and couldn’t breathe properly, so after just two days she had to go back into hospital. She got discharged again, was home for another two days, and then we spent the next six months going back and forth between Poole and Southampton hospitals until she had her heart operation and was finally able to come home permanently. They successfully repaired the holes in Scarlett’s heart but she still has a leaking valve, which she’s currently on medication for. We’re not sure if she will require another operation or not – only time will tell.

“One lovely thing did come out of being in hospital for so long, though. Scarlett met another little girl with Down’s Syndrome while she was in Southampton and they are still best friends today.

“Scarlett is now on a really small amount of oxygen and we are waiting on a sleep study to be carried out on her at Southampton hospital, where they will monitor her and look at her saturations and heart rate. Hopefully at some point in the near future we will be able to get rid of the oxygen completely. Scarlett still has her NG tube but she’s eating really well on her own now – she can have sandwiches and fruit and cakes – she really loves her food! The tube is really just for milk and water now, which she finds harder to swallow.

“When I fell pregnant with Scarlett we knew there was a risk of Down’s Syndrome because of my age. We had three miscarriages in between her and Emily, which is why there is a big age difference between them. The hospital actually phoned me up on my 40th birthday to tell me our baby would have Down’s Syndrome; it didn’t matter to us at all, though.

“What was more of a shock was that I experienced a lot of negativity before Scarlett was born and felt I was constantly being questioned about whether I would continue with the pregnancy. Even right up to giving birth I was being asked “Do you still want to go ahead with this?” It made me feel like I was carrying some kind of alien! If people could just meet little children like Scarlett it would totally change their mind about Down’s Syndrome. There can be complications associated with it, but often babies are born just fine, it just takes them longer to do things. Scarlett is eighteen months now and can’t quite sit yet – to me it’s just like having a baby for longer!

“Scarlett’s such a happy little girl, she very rarely cries and nothing phases her. She really enjoys going to StoryBox, which is a play session for babies and toddlers all about telling stories through music and singing. Everyone knows Scarlett, and she has a special place reserved for her, as we have to bring her buggy and oxygen with us. When I first took her it was difficult because we got looked at, and I understand that – we all look at things that are different. But once you get talking to people it’s amazing how much you have in common. The girls who run the group did a little feature on Scarlett for Down’s Syndrome Awareness Day and it was so lovely.

“Julia’s House have been a part of our lives for almost a year now. I was aware of them as a local charity, but until you find yourself in a situation where you need that support you don’t really know exactly what it is they do for families.

“I remember when Scarlett was in the hospital and we were talking to one of the other parents, she mentioned that her child was supported by Julia’s House. Coincidentally, my sister had also sent in a referral for us as she knew how tough we were finding things. It was so wonderful when Helen, who is now Scarlett’s Named Nurse from Julia’s House, got in touch with us to offer support and set up her package of care.

“Julia’s House is amazing. And just being able to leave Scarlett at the hospice with their trained nurses and know she is safe, and that I can have a few hours to be with Emily or to catch up on housework … it just takes that pressure off you. Scarlett always comes home with something she has made there – they do lots of lovely arts and crafts with the children.

“I had to do a course as part of Emily’s paediatric referral, which took place every Thursday for three months. I wondered how on earth I would be able to do it, as you can’t take children with you. Luckily Julia’s House was able to be with Scarlett so I could go off and complete the course. Scarlett has also stayed overnight at the hospice, which was amazing – I didn’t know what to do with myself!

“Scarlett loves her Julia’s House nurses and carers, and they love her. Having experienced so much negativity during my pregnancy it’s so lovely when they say things like:- “Oh, isn’t she pretty!” It sounds strange, but I never thought somebody would say that about her, because she’s got Down’s Syndrome. And that’s not the case at all.

“Julia’s House has offered our family so many lovely opportunities. I’ve been able to take up some of the complementary therapies available to parents, and have had some much-needed massages. Emily loves spending time with her Sibling Worker. She went to the Siblings Christmas Ball and she really enjoyed it, because for once it was something for her. That’s really important. And Nathan is going Go Karting with the other Julia’s House dads soon. That’s great because the dads often get forgotten, and it’s been really tough for them, too.

“Thanks to Julia’s House we are having a break next week, at a local Hoburne park. It will be so nice to have some family time, go swimming or to the disco. Just having a break is an amazing thing, it means so much to us.

“With Julia’s House nothing is too big or too small to ask of them. They are always happy to answer any questions we have. When you visit the hospice you can see that there are so many families who need their support. I almost felt a little bit guilty as there were families worse off than us. But every situation is different and without Julia’s House I don’t think we would have coped as well as we have done. There’s really not much support out there, you’re completely on your own. Julia’s House were a godsend, providing us with advice and someone to talk to, and through them we’ve been able to meet and make new friends who are facing similar challenges. It’s a safe place, there’s no judgement and everyone is equal. I love that.”

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