Louie's Medical Funding for a Cranial Helmet

At the request of family and friends that know what we've been battling. We're sharing our Son's journey and creating a space for them to share and have acknowledgement of fundraising efforts towards our babies current, ongoing, and future treatments.

Louie's Story

Week 29 of Pregnancy - After an already complicated pregnancy with regular consultant appointments and hospital admissions, we suffer an abdomen trauma which results in the start of contractions. Little did we know from this point onwards, our little boy's movements would be significantly reduced. Every day from this point onwards was a battle to keep him inside another day closer to our due date.

Week 30-32 of pregnancy - Battling Covid in Hospital and finding out that our little boy had stopped growing.

Upto week 35 of Pregnancy - We had spent the majority of our days in hospital. Louie had barely grown. His movements consistently reduced. Loss of fluid from his placenta. A growing concern around his heart and consistent heart decelerations we were closely being monitored for too.

35+6 - We were 'Luckily' already admitted in hospital when some worrying test results had come back the previous day. I couldn't sleep that night and I knew that something was wrong, something just didn't feel right. So I called a nurse over and requested to be put back on the CTG monitor. I'd not felt my baby move for hours and was having strange pains in my pelvis. The monitor was showing signs of my baby being in distress, having increasingly worrying heart decelerations but this time his heart was struggling to get back out of them.

That was it. My Husband just made it in time to the hospital as they were rushing me to theatre for an emergency C-Section.

Just on the cusp of 36 weeks - Our Little Louie-Francis was born.

Unfortunately straight after birth, we had to spend a little short time apart as he was taken to Neonatal and we were both being treated for infections later found to be Sepsis.

Once we were together and on the post natal ward. We had an extra visit from some of the theatre staff including the surgeon and Anaesthetist that helped to deliver Louie and also a Peadiatrician.

They told us that during our procedure, Louie's chord was double wrapped around his neck. The cause of his heart decelerations were due to the lack of oxygen he was recieving and he would never have survived a natural birth should I have gone into labour, or been induced which was the consultants original plan for us. So we we're very lucky, and blessed to have him with us.

In addition during the C-Section, Louie was actually stuck inside my pelvic bone which meant forcibly removing him with extra forceps.

This resulted in significant bruising across his back, shoulders and neck. And a very oval shaped head (front to back).

Fast foward 4 months after noticing more and more issues with Louie's head and face shape worsening as each week goes by. Endless amounts of appointments with GP's, nurses, consultants and peadiatricians. We finally recieve some answers for him.

Louie has been diagnosed with a Cranial deformity, full disposition of both ears, a dispositioned jawline, A frontal bossing (pertrusion of his forehead on one side), a tightened Tortocollis muscle on one side of his neck, and Plagiocephaly.

It's thought to possibly be caused by the prematurity of his bone development at birth and the forcible nature of his delivery.

Cranial scans and tests for Louie are ongoing.

We are also undergoing Musculoskeletal Peadiatric Physiotherapy for him currently.

Unfortunately, the best chance of Louie regaining a natural head-shape, would be to provide him with a specialised helmet as soon as possible. That is not covered on NHS funding, and would need to be funded privately.

Aside from Louie's medical issues, he really is such a happy little smiley baby and everyone that meets him falls in love with him.

We obviously want what is in Louie's best interests and so will be fundraising with family and friends to make this possible.

All money raised for Louie, will initially go toward the outlay of a helmet and any consultations. Anything over our target, will go towards future costs of consultations, treatments including further helmets if needed, travel to and from hospitals/clinics/treatments centres which are hours away from home, and for if he will need anymore specialised equipment like a bicycle helmet or even glasses should he want/need them through his childhood.

 Thank you for reading Louie's Story 'so far'.

We'll keep you updated on our Journey.

*Updated as of 24/08/2022

As a family we are so overwhelmed with peoples ongoing Love, support, kindness and generosity towards our Little Louie.

Thank you from the bottom of our hearts

Louie's Journey

23rd August 2022 - First Appointment at the Orthotics Clinic.

- 3D Cranial scans taken.

- Confirmed that Louie has severe cranial deformity but a helmet is the best chance of him regaining some form of 'normal' (I hate that word) shape.

- Treatment with initial helmet will be around 4/5 months.

- Helmet has been ordered!

- Informed that Louie has a >95% chance of needing a Second Helmet.

Due to the such high possibility of Louie needing a second helmet that will incur the same cost again, we will keep fundraising for him so his needs will be met

Pending 6th September - Helmet Fitting!