Skye's story

Skye was born on 4th November 2001, after a long and traumatic birth. Her face was very bruised from the forceps and she was also very jaundiced and had to spend the next 48 hours under UV lights. The doctor at the hospital was concerned about a mark that hadn't faded from Skye's face.

At 4 days old, it was mentioned that the mark could possibly be a port wine stain and a specialist came to check her eye pressure for glaucoma which was fine. At 5 days old, we were told we could go home. 

We went home and looked around to get more information about port wine stains while trying to come to terms with a new baby and what the future would hold for us. 
Within the first two weeks of her life, the upper left side of her face began to swell and the colour became a lot darker, as well as her eye weeping very badly. A visit to the GP got us a prescription for eye cream, which didn't help. She also had a blocked nose and cough and she was refusing to eat and we were told it was just a cold. We also noticed that she didn't like to lie flat and preferred to be higher up. For the next 2 weeks, she spent a lot of time asleep on her Dad's shoulder as this is when she was most comfortable. By the time she was four weeks old, her left eye was totally closed. 

By now, we were very worried. We'd done more reading on the subject and thought that it could be a Haemangioma because of the swelling. At 5 weeks old, she was still suffering from this "cold" and struggling to breathe and then she started to turn blue. We rushed here to the A&E, where they were more concerned about how she'd banged her face than helping her to breathe! 

She was given oxygen then she was admitted and put on a nebuliser. On the second day of being in hospital a nurse noticed some redness in Skye's mouth during a feed and called a consultant who dismissed it. We had already noticed this and told the doctors about it previously. The nurse remained concerned and called a second consultant who transferred Skye straight away to Pendlebury Children's Hospital (now the Royal Manchester Children's Hospital), where we met Mr Rothera, ENT Specialist, who performed an emergency endoscopy and then confirmed to us that Skye's airway was blocked by the haemangioma, some 80%.

He took her into surgery for a tracheostomy and told us that she had a sub-glottic haemangioma. Skye was put on a high dose of oral steroids to reduce the swelling and was in hospital for 6 weeks. Whilst we were in hospital, she had an MRI to rule out any internal haemangioma and PHACE. This came back clear. Once we had mastered the trachy care and changes, we were allowed to go home. 

It was hard work dealing with the stares, but in addition, we had to deal with the issue of a child with a trachy. We tended to stay in a lot in the first year; however, we got to understand the noises and could deal with the issues of a trachy. Skye was very responsive to the steroids, which she was on for a year and they did a great job of reducing the swelling and redness. Along the way, we encountered ulcerations, which are horrendous things, and Skye has ended up losing half her eyelashes on one eye and has scar tissue on her upper lip from them. 

We were under Mr Rothera's care until Skye's trachy came out at 17 months! What a relief to hear your child after such a long time! He referred us to GOSH and after speaking with Jane and Dr Syed, Skye went for her first laser treatment at 2 years and 2 months. Her stoma was closed when she was nearly 3 years and we were discharged from Mr Rothera. In all, she had 4 laser treatments, at 3.5 years, 4.5 years and her last one was at nearly 7 years old. At this stage, the laser wasn't having a big effect and so we decided against any more treatment.

Skye will be eleven in November and is such a beautiful girl. She has her down days and is a typical nearly eleven year old, but she has come so far and every day we look at her and remember what she has been through. We hope that Skye's story can bring hope to others who are on a similar journey.