Jesy Nelson

[EvangelicalAboutButteredToast]

Just read the online news story in regard to her beautiful little baby girls.

I know it’s ridiculous but I feel so sad for her and her little family and I suppose I just wanted to write it somewhere. I followed the story online when she was fighting so hard to keep both the babies safe during her pregnancy and saw the interviews she gave. I understand they now have a potential life limiting condition although I know with early diagnosis there is a better prognosis now.

I watched her documentary when she was struggling so much with public life and the pressure she felt to conform to a conventional pop star and be pretty and slim. I could relate to her feelings and just wanted her to get her happy ever after. Life can be so cruel.

1 in 40 are thought to be carriers, that's a lot

Oh ffs, stop trying to outdo each other.

As a mother of a 38 yr old man with a profound disability. Believe me, she will be feeling this way forever.

Heartbreaking, she has already endured so much with the difficult pregnancy and now this. Life can be so cruel. My thoughts are with them, they seem such a lovely family.

Why is life so cruel at times ? I honestly don’t understand why things like this happen to anyone let alone innocent babies

been thinking about jessy she seems really lovely too

It’s so sad, surely we need to be screening parents who may carry these genes first? I know it won’t happen but it would be less traumatic than finding out when your baby is born, and no I’m not a fan of eugenics, but this is very different to downs syndrome in terms of prognosis.

I watched her video and I think the BBC article has chosen a really poor headline. Jesy mentions having to learn how to use breathing machines and that the girls will never regain the neck function they had, she does mention walking as well but it shouldn't be the key quote.

Poor Jesy, as a new Mum you're always worried that you'll miss something because you don't have experience of what's usual. It's absolutely horrific that they were fobbed off when they tried to raise concerns because the girls were premature and a simple heel prick test could have saved them a lot of heartache. Those poor little girls have been through so much already, life can be so cruel.

I begged for genetic testing before i had my dc as there is a genetic condition in my family. I was told no.

One of my dc had an antenatal diagnosis of something that was picked up at the 20 week scan. It was surreal and in some ways it was helpful and some ways not. We had a phone call from a specialist nurse within 24 hours and we saw the surgeon the following week. We had a detailed 4d scan at 28 weeks. It was good to know before he was born but for weeks all we knew about him was his sex and his diagnosis. We didn't know anything about the lovely, kind, helpful boy he would become.

from what I have read i think the baby needs to be diagnosed straight away to get the best possible outcome early intervention is key and apparently this can be diagnosed by a simple heel prickly blood test
this should be offered at birth to check for this but I don't think it is

Really awful for them all. Heartbreaking 💔.

very sad that the uk could have implemented the heel prick for this like other countries have and significantly impacted the lives of these 2 little girls and their parents and family . They do it in the us, aus, can, Japan, other euro countries. The uk needs to catch up. This is negligence from the people in charge.

Oh God bless all involved in this. Life can be so cruel.

Perhaps Jesy’s situation will raise awareness.

1. uk needs to be heel pricking newborns for this. We are well behind other developed countries

2. you can pay a few hundred £ to get yourself tested to see if you carry genes such as this one. If both parents carry, you can do IVF with embryo testing to eliminate the possibility of your child having a condition that you and your partner carry.

I know a girl who has CF. Both parents totally unaware of being carriers.

This is such terrible bad fortune for the family.

Hopefully the babies can still be comfortable and happy as far as possible. Wishing them all love and strength.

Newborn screening for a different condition saved my son’s life. I looked up the conditions screened for in the UK, and it’s also missing. My heart breaks for this family and all families in the UK who are affected by the lack of comprehensive newborn screening. It is a cause well worth advocating for.

I hope they get a lot of practical type support to help look after them. Would be exhausting with just one baby with such high needs, I can’t fathom coping with two.

Any parent can under go genetic counselling if they wish, that is already an option that people have. It costs from about £350. You can then IVF to prevent embryos with the gene being implanted.

But it isn’t a fail safe, a friend has genetic counselling as her nephew was born with CF, she was clear so they had a baby who was then born with CF. There are many types of CF (and many types of sma), so the most common types will be screened for, or in her case they knew the exact type of CF her nephew had so thats what she was screened for. ‘Luckily’ her daughters CF isn’t as severe so it won’t have a huge impact on her health or life expectancy.

It is clear you were not blaming. Crazy how people want to argue on a post like this! Some try it everywhere. Not the time or the place! Let’s just all agree it’s bloody horrendous and not fight over it ffs

Most people won’t even think about it though unless they have had a child with a condition or know someone who has had a child with a condition. There’s very limited awareness.

My cousin was born with this. She had multiple operations growing up and had steel rod put in her back to straighten her spine up. She had her struggles and didn't have much strength but she went to normal school, we used to go out shopping and she had quite the social life. She had an electric wheelchair once she was older. She worked, got the train to work every morning, she had a helper at work if she needed the loo. Passed away aged 26 but this was from Sepsis.

I know what you mean and how unhelpful it is. The only thing in their defence though this time, is that Jesy herself in her video said she had no doubt her girls would defy all the odds. So I think some
people are echoing that language

Jesy’s babies have a worse type and are likely to die in early childhood.

Nope, same type, Werdnig-Hoffman Disease

It's devastating and my heart goes out to them both.

The media focusing on the fact they will unlikely be able to walk is odd considering SMA type 1 is life limiting.

I saw this in the news and have heard how devastating this SMA can be so it’s a dreadful diagnosis for any child to receive. Bless Jesy and her family. Wishing them the best.