Henry M's quilt    (Quilt Completed)

Thank you

Now that’s Henry’s feeling better I can share some pictures of him with his beautiful quilt! We can’t thank you all for your love, kindness and amazing talents to create a beautiful keepsake for our little man, it means so much to us!

Finished photos

Individual squares

Card

Stitched by: Sandra

Biography

At 28 weeks in my pregnancy I was diagnosed with Polyhydramnios and was given fortnightly scans to check on baby but no further concerns were raised. Henry was born at 36w+5d. It wasn’t until he was 9 hours old that things started to drastically change. He went to NICU for monitoring but never came back up. His oxygen was low and he needed intubating.

Fast forward a few days and Henry seemed a perfectly healthy baby. Ee were told his complications could be due to fast labour or due to all the other excess fluid I had. On day 5 discharge checks they detected a heart murmur but weren’t initially worried and wanted him to have an ECG and ECHO to review his anatomy. And there it was the devastating words rushing around our heads “survival” “complex pulmonary atresia and mapcas” “open heart surgery” “transfer to specialists”.

Henry was transferred to Leicester Royal Infirmary and started on Prostin. All his saturations were monitored but by 21 days old he’d successfully come off Prostin and was holding reasonable saturations. We were discharged home to enjoy our baby and let him grow!

And that’s exactly what we did - in between countless hospital admissions with respiratory problems / chest infections / static weight and new diagnoses along the way. He was able to keep growing until 14 months old when he had his first open heart surgery. Following his surgery came a tough fight to stay with us. His first theatre trip turned into 4 and his almighty battle with ECMO but he survived and we are truly blessed he had the strength!

Since Henry’s surgery in April 2024, he hasn’t been back home (9+ months) due to ongoing respiratory issues and post surgery complications (vocal cord palsy and right arm weakness). We are very near the end of this very lengthy traumatic admission but we are just so grateful to have our special boy with us each and every day. His fight is our fight.