The Bad Thing singer endured a complicated pregnancy which saw her undergo surgery after her daughters were diagnosed with twin-to-twin transfusion syndrome
Former Little Mix star Jesy Nelson has shared a heartbreaking update on the health of her twin babies – Ocean Jade and Story Monroe.
The Bad Thing singer endured a complicated pregnancy which saw her undergo surgery after her daughters were diagnosed with twin-to-twin transfusion syndrome (TTTS).
According to the NHS, TTTS affects 10 to 15% of identical twins who share a placenta and “can have serious consequences”.
The condition is caused by abnormal connecting blood vessels in the placenta which leads to an imbalanced blood flow from one twin to the other, leaving one with a greater blood volume than the other.
The former X Factor contestant, who conceived the twins with her musician fiancé Zion Foster, underwent an emergency procedure and spent 10 weeks in hospital before giving birth prematurely at 31 weeks last May.
On Sunday, the 34-year-old shared a heartbreaking video to Instagram that saw her pause to stop herself from crying multiple times.
Jesy told her followers that her twin girls have been diagnosed with a rare genetic condition Spinal Muscular Atrophy (SMA), meaning they may never walk.
SMA weakens every muscle in the body and leads to symptoms like floppiness, difficulty breathing and swallowing as well as delayed motor skills. Jesy said she is now acting as a full-time nurse to her girls and has had to do ‘things no mother should’.
“I am grieving a life I thought I was going to have with my children,” said Jesy as she sobbed in the self-filmed clip. The singer first went to her GP after her mum noticed the twins were not moving as much as they should be for their age.
Sharing the diagnosis with fans, Jesy said: “I wanted to come on here to share some news with you guys. I’m not actually sure where to start with this video.
“A few months ago my mum noticed that the girls were not showing as much movement in their legs as they should be.
“It wasn’t really a concern to me at the time,” said Jesy. “From the minute I left NICU I was told, ‘Your babies are premature so don’t compare your babies to other babies. They won’t reach the same milestones just take them as they are.’
“It didn’t really ring alarm bells to me. They are my first set of children and I was told not to compare to them. Health care visitors insisted everything was fine and the girls were healthy.
“There were a few signs later on that the girls were struggling to feed properly. We would take them to the GP and say ‘Our babies are not feeding as frequently as they should.’ They said it was fine and to try little and often.”
Jesy went on: “Long story short, after the most gruelling three to four months and endless appointments, the girls have been diagnosed with a severe disease called SMA type one. It stands for Spinal Muscle Atrophy which affects every muscle in the body from legs, arms, swallowing.
“Over time it kills the muscles in the body. If it’s not treated in time, your baby’s life expectancy will not make it past the age of two.
“Once the girls got treated it was a very rapid process. Time is of the essence with this disease.
“When they assessed the girls at Great Ormond Street, we were told they were never going to be able to walk. They would probably never regain their neck strength. They will be disabled,” said Jesy.
“The best thing we can do right now is to get them treatment and hope for the best,” she added. “Thankfully the girls have had their treatment which I’m so grateful for. If they didn’t have it they would die.”
There is currently no cure for SMA, but there are treatments and support available to help people have the best possible quality of life.
Explaining how her life has been turned upside down in the last four months, Jesy said: “I am grieving a life I thought I was going to have with my children.
“The hospital has become my second home. I feel like I’ve had to become a nurse within two weeks of getting the diagnosis. I’ve had to do stuff no mother should have to do to their child.
“I made this video because the last three months have been the most heartbreaking time of my life.”
Breaking down in tears, Jesy said: “I know I have to be grateful. At the end of the day they are still here and that’s the main thing. They’ve had their treatment.
“I truly believe that my girls will defy the all the orders and with the right help they will fight this.”
Jesy’s news comes after she revealed she had filmed a six part documentary about her pregnancy and what she described as a “new chapter in her life”.
Jesy and Zion documented the highs and lows of their difficult nine months for a series with Amazon Prime.
