SCARLETTS STORY

Our beautiful little girl Scarlett Rose was born on Sunday 7th August 2016. Labour started and all seemed to go well however after hours and hours of limited dilation and both me and Scarlett becoming quite distressed we were taken in for a emergency C-section.

Scarlett was born a healthy 7lb1oz and all seemed to be well. Looking over at her with the peadiatrician and hearing her cry made me assume everything was fine but minutes later before I even had a chance to hold her Scarlett was taken to the Neonatal Intensive Care Unit. Having undergone major surgery I was taken to a ward and Scarletts dad Glenn went to NICU to check on Scarlett and this was the moment the excitement of having a new baby turned to complete fear. 

When Glenn returned he was accompanied by the same peadiatrician who was present when she was born and I could tell by his face, something was wrong and it was bad. At this point we were told that Scarlett had needed to be intubabted (breathing tube placed) and that they were struggling to stabilise her. They were unsure at this point if it was Scarletts lungs or Scarletts heart causing her to be so poorly but decided quickly that she needed more intense care so the descesion was made to transfer Scarlett to Evelina Childrens Hospital Peadiatric Intensive Care Unit. 

Scarlett arrived at the hospital and immediately had a echocardiogram (scan of the heart) and it was then that we were told that Scarletts Left Ventrical was not working and she had a condition called Critical Aortic Stenosis (narrowing of the aortic valve) and this was why she was so poorly. 

She went in for emergency surgery to have a balloon stent at 12 hours old and placed on medications to keep the valve open and to support the funcion of her heart.

Days and days went by and Scarlett looked like she was making progress so the cardiologist called a meeting to discuss what would happen next. At this point we were told that Scarlett would need to undergo a three stage open heart surgery called the Norwood Procedure to have any chance of coming off ventilators and survival, however she would not be able to have these until she was stronger. 

Days, weeks and months went by, and we sat at Scarletts bedside every day and watched her become more and more stable however more bad news was coming our way........another meeting was called when Scarlett was 12 weeks old and we was told that surgeons at Evelina would not be comfortable performing surgery as it would be a very risky procedure and so Scarlett had two options, the first being to apply to Great Ormand Street to be accepted onto a heart transplant list or to reach out to other cardiac centres across England to ask for a second opinion so that's exactly what we did.

After three days of waiting we recieved some news from Birmingham Childrens Hospital Cardiac Centre, they had reviewed Scarletts scans and said they would be happy to perform the surgery in Birmingham. We felt this was the right choice for Scarlett and the next day she was transferred to Birminghams Intensive Care Unit. Her surgery was performed by the amazing Professor Baron. She was in surgery for hours and we were terrified and preparing for the worst, but Scarlett came out of surgery fighting showing all good vital signs and even managed to come off the ventilator for the first time with c-pap support (a lower level of breathing support.)

Two weeks in Birmingham and we were taken via helicopter back to Evelina, we finally made it to Savannah ward (cardiac ward) and remained on the ward in Savannah a further 12 weeks as Scarlett had feeding issues and depended on a feeding tube, so was unable to come home with a feeding tube at this time. (Evelina policy not to allow children home with feeding tubes inbetween stages 1 and 2 of the Norwood Procedure for safety reasons)

At 6 months old and all this time in hospital by her bedside everyday we recieved news that Scarlett was ready for her second stage of the Norwood Procedure so we travelled back to Birmingham, this time round Scarlett had a few complications after surgery and found it difficult to come off the ventilator......After two failed extubations she fianlly manged it third time lucky!

Scarlett returned to Evelina un ventilated and no breathing support and after two weeks observation the time came to finally take our little warrior home.

Scarlett was just over 6 months when she came home and she thrived from then onwards, she sat up at 12 months and walked not long before she turned two. She had one over night stay in hospital for observation with a cold but she truly was a miracle and doing amazingly well. (She even managed to attend nursery)

We attended cardiac clinic every three months where Scarlett thought she was in charge because everyone new her from the long period of time she spent on Savannah ward and all was going well.

In August 2018 Scarlett was admitted to the local hospital with a cough and chestyness, after a few days she was transferred to the specialists at Evelina and at this point our world was turned upside down. 

After one day Scarlett was sent from the ward to intensive care where she spent the next 18 days fighting for her life simply from a common cold. Unfortunately Scarletts heart just couldn't handle the stress and she became to weak to fight any longer and the decision was made to turn of Scarletts life support and let her go peacefully while sleeping.
On the 18th September our Amazingly strong little girl grew her wings. 

So now 5 months on we want to give something back to the one place who supported us through this journey and took amazing care of Scarlett and us in her final days, they supported us and made sure that we were included and made every final decision in Scarletts care.

The charity where all funds raised will be going is Evelina Childrens Heart Organisation.

The money you donate will be be donated in the memory of our Warrior Princess Scarlett Rose Berryman and will be used to:

💗 provide a comfort pack for families arriving at Evelina by ambulance in emergencies having no time to pack.

💗 pay for specialist equipment within the hospital.

💗 helps run events for and gatherings for families .

💗 funds cardiac support workers to visit families in hospital.

💗 provides specialist cardiac antenatal classes for expecting parents.

Thank you for reading Scarletts Story we are extremly grateful for your donations.

💗Love Megan and Glenn Berryman💗