Ewan Pilley

Ewan’s Story

“Everyone that meets him falls in love with him.”

Ewan Pilley, Trisomy 13, 06/16/2015, London, UK

Ribbon LogoUpdate May 2, 2016:  So…. Since my last entry Ewan has had his cleft lip surgery. All went really well. Peg fitted. Both side of Ewan’s lip was stitched together and was to act like strapping to pull the premaxilla down and under. Then in 4-6 months he was due to have another op to reshape the lip again.

It’s been quite tough going. Ewan has been quite upset and we ended up back in A&E after being discharged as he seemed to be in a lot of discomfort. They gave us some stronger painkillers and sent home.

We then ended up back in A&E a couple of Sunday’s ago with ewan being really upset. We thought it might be due to the peg.
They wanted to transfer us back to the Evelina but first wanted Ewan to have a cannula in for the transfer. They tried 5 times to put a cannula in! Which was awful as they couldn’t find a vein and he was screaming.  In the end we said enough is enough and we inserted a ng tube again in case he needed Medication quickly on the journey.
The ambulance took another 2 hrs, so we were finially transfered to the Evelina children’s hospital in London at 6am.

We got discharged at 10.30pm Monday. He had an x-ray on his peg site and they said all looks fine. Not sure what’s causing his discomfort.
I then noticed the scab on his lip had come away a bit and it looked like only one stitch is holding his lip together on one side.
We saw the surgeon monday who said it was coming apart but didn’t look infected. Just have to see how we feel in a few months, to see if we want the other side done or if we feel it’s too much and want to wait longer.

It’s been a lot tougher than I thought, but Ewan’s a right tough cookie. Just hard to see him so upset and have tears, as he’s never really cried since he was born.

Ewans left side of his lip has now come apart again. But seems less distressed so maybe it was pulling which was hurting him.

In the last week Ewan has for the 1st time taken toys that lights up off of me and held on to it. He has always dropped things that I have put in his hands within seconds. Ewan has also started to turn over on to his belly for the 1st time. Wonderful progress this week. I’m so proud of our boy! He sure is a miracle  ??

Original text: Last October me and my partner went on a super road trip in America and I found out I was pregnant in Las Vegas. We were completely over the moon. On our 20 week scan we were excited to find out the sex of our baby. My heart felt heavy as my consultant kept going over baby’s heart. I asked if there was a problem knowing something was wrong. He said he was waiting for baby to move his hand as he couldn’t see his face. Eventually he stopped the scan and told us he had found a problem. He explained that he could see our baby boy had a bilateral cleft lip and palate and also explained that it can be associated with different genetic conditions. We were offered the amniocentesis test but declined as there was a risk of miscarriage and we had lost another child just over a year before. Even though it’s only a 1 in 200 chance, we felt it was too high. We decided against it and put our baby’s destiny in God’s hands.

We quickly came to terms with the cleft and saw many amazing photos of before and after cleft repair operations. The thought of a genetic problem also left our minds. Throughout the pregnancy i had numerous scans and was told I was actually having a girl and she was always on the very small side.
On the 16th June at 15.29pm I gave birth to our beautiful boy. Yep it was a boy!!!!
Ewan Joseph Pilley was born weighing a healthy 7.5lbs.
We knew little Ewan had a bilateral cleft lip and palate but they took him away for a few more checks and tests as soon as he was born.
They told us they had seen a problem with his aortic arch and had poor oxygen circulation. They also said he may have sight, hearing and some other genetic issues. All in all they took him straight away in an ambulance to the Evelina children’s hospital in London with my partner for further investigation.
He was in the Pediatric Intensive Care Unit (PICU) for just under a week. After more tests, the doctors came back and said that the heart problem may not be a bad as first thought. He also had a stomach scan, basic brain scan, chest scan and multiple blood samples taken to test for various things including genetic problems.
We found out he has a PDA and coloboma of both eyes, with a cataract in his left eye.
The genetic test came back and it showed that Ewan had full T13.
My heart broke at the thought of losing another child. Since that day though Ewan has amazed us daily. He is such a strong little boy and has beaten all the odds.
At exactly two weeks old, Ewan came home and has continued to thive!
Update on eyes – Ewan has coloboma of both irises. One complete and one incomplete. The cataract hasn’t got any worse, which is great and the hemorrhages at the rear of the eye have cleared up. All in all the eyes can see as long as they receive the right signals from the brain.
Update on ears – after 6 hours of testing they have said they think Ewan is probably deaf in both ears. He has now been fitted with hearing aids. It’s too early to tell if they are helping or not.
Ewans initial heel test results came back showing high IRT levels. We were told this could indicate he could also have cystic fibrosis. Yesterday we got further test results confirming he hasn’t got cf!
Update – Ewan 13 weeks old now – just had an ultrasound of Ewan’s heart and his pda in his heart which was about an inch wide is now only 1mm wide and has closed on its own. Should completely close on its on in the future.
Don’t let any doctor or anyone tell you trisomy 13 children are incompatible with life! We were shocked to hear that doctors say this and advise termination. This doesn’t happen here in the UK and there would be outrage if any doctor suggested this!
Ewan is our super hero and has already had a huge impact on so many peoples hearts and lives. Everyone that meets him falls in love with him.
He is our wonder child, he is our everything!

alisonjulian@hotmail.com