Thousands raised to get helmet for baby with flat head syndrome

Leah and Jodie Wilde-Shears have raised over £3,000 to get one-year-old Jaxon a specialist helmet for flat head syndrome, a condition he developed during Jodie’s traumatic pregnancy.

Leah, 34, and Jodie, 36, from St Leonards, had made several attempts to get pregnant through IVF and were thrilled when they finally were told Jodie was carrying twins.

Leah said: “We were quickly made aware of twin one having some problems. 

“We were given the heartbreaking news that twin one, Phoenix, had five separate congenital heart defects. 

“They braced us for the reality that Phoenix probably wouldn't make it through the whole pregnancy and if he did would not be able to survive once out of the womb.”

The couple lost Phoenix at 29 weeks and due to the dangers to the other twin, Jodie was forced to continue carrying both babies to give Jaxon the best chance of survival.

Jodie managed to keep going for five more weeks and during that time Jaxon kept growing, but because Phoenix was no longer moving he was squashed against Jodie's ribs. 

This began subsequent issues with the shape of his skull.

On March 21, 2021, Jodie haemorrhaged at 34 weeks and the twins were born in an emergency caesarean. 

Leah said: “As we said our goodbyes to Phoenix and arranged his funeral we made the daily trips back and forth to the special care baby unit to see Jaxon. 

“This is where we started to notice his preference of laying with his head to one side and because of his prematurity he wasn't strong enough to turn his head for quite some time. 

“Fast forward to now and our one-year-old’s head shape has progressively got worse.” 

Jaxon was recently diagnosed with plagiocephaly and brachycephaly, a flattening and asymmetry of the head.  

He had a private consultation at a clinic in Kent and his parents were told he is in the top one per cent severity of asymmetry and head width.

If not corrected by a cranial helmet it can affect his muscles in his neck and range of movement, as well as his jaw alignment, hearing, balance, ability to wear a bike helmet or glasses. 

The service is not available on the NHS due to its expense.

The clinic requires the deposit in just 24 hours and then the remainder within a few weeks.

The family will then have to make the 70-mile round trip to Kent every two to four weeks for continual monitoring and measuring for the next nine months to a year. 

Following a recommendation by a friend, the couple decided to set up a Go Fund Me page to help fund the helmet as well as the frequent trips back and forth.

Leah said: “We feel Jaxon has already been through so much in his short little life and we don't want him to have a constant physical daily reminder of how he came into this world.

“We feel that if we can help him to not have to live with this we will do our utmost. 

“The money may not seem a lot but it is needed in a very short amount of time. 

“These two stubborn, proud parents have certainly had to learn this year to know when to ask for help, be it from friends, family, doctors or therapists and this is a time where we have to put our embarrassment and pride aside and do the right thing for the sake of our little fighter Jaxon.”

Within 48 hours Leah and Jodie had received the full amount in donations to the page, and have since exceeded the original total. 

Because of the quick turnaround, Jaxon will be able to receive his helmet next week.

The couple say they are “eternally” grateful to their local community and friends, many of whom made the majority of donations. 

Jodie said: “Weirdly, despite everything we’ve been through, we still class ourselves as the lucky ones because of all the support. 

“We are eternally grateful for even the pennies that people have donated.”

Jodie and Leah both feel it is important to discuss the loss of Phoenix and hope it will encourage others to feel they can speak about child loss. 

Leah said: “Jaxon is the reason we get up in the morning and carry on. 

“He is definitely making up for lost time of being a poorly baby, now he’s a little Wreck It Ralph. 

“That’s why we’re getting him the helmet, we want to give him the best possible start, we want to give him everything that we can.”