In March 2012, we welcomed our long-awaited, first child into the world on the 6th March, at 10.15am He was born perfectly healthy, with rosy cheeks and masses of silky, dark brown hair. We named our son Aidan – meaning “fiery little star”. We didn’t know it, but it was the perfect name for a little boy who would leave our world to light up the skies.
When Aidan was 32 hours old, a doctor on the Post-natal Ward noticed small seizures in one of his legs, and he was transferred to the Special Care Baby Unit with a suspected infection. We were heartbroken, but hopeful. We spent the night in a room just off the labour ward of the hospital, listening to parents singing lullabies to their newly born, crying babies.
The next morning, we were told that Aidan had been diagnosed with a rare metabolic condition called OTC Deficiency. Although he had appeared perfectly healthy at birth, unbeknown to anyone he had been suffering tremendous amounts of irreparable brain damage. We were told that Aidan needed to be transferred to a specialist hospital for dialysis and to wait for a liver transplant. As our unresponsive, two day old baby was prepared for the journey that might save his life; we hoped and prayed for a miracle.
And then his heart stopped. It did start again, but Aidan had suffered so much brain damage as a result, that the outcome was inevitable – our son was going to die. We were told that we could choose to send Aidan for treatment that had a very small chance of prolonging his life by a very short time, or we could decide to spend what precious little time was left – peacefully saying goodbye to our son. We did not want our brave little boy to suffer any more.
We asked for the hospital Chaplain to come and name Aidan. We had already begun planning his naming ceremony for the following September, and although the ceremony we did have wasn’t what we had planned for our son – it was special and beautiful, nonetheless. We had planned for the Reverend who married us to hold Aidan’s naming ceremony in the September after he was born, and although the ceremony we did have wasn’t what we planned for our son, it was special, and beautiful nonetheless.
Aidan’s Grandparents came to say goodbye to their Grandson, and afterwards we asked for the staff to remove everything that Aidan was connected to, except for his pain relief, and to leave the three of us alone. We were finally able to hold our son again, without tubes and machines in the way. We spent some time holding and talking to Aidan, telling him how very loved and wanted he was, and promising to make sure that his little life had meaning in the world.
Aidan died one hour later at 9.15pm, sleeping in his Mummy’s arms.
He was just fifty nine hours old.
We held a very private funeral ceremony for Aidan on the 15th of March 2012. We dressed him in what we had intended to be his coming home outfit. He held the cuddly monkey that his Daddy bought for him when he was one day old, and was wrapped in the fluffy white baby blanket that his Grandma bought him before he was born. We placed a tiny bouquet of miniature white roses, baby’s breath and sparkling gold stars on his little white coffin. Aidan’s funeral service included beautiful, comforting prayers and poems that we had chosen for Aidan, and the song ‘Baby Mine’ by Bette Midler, From Dumbo. After the ceremony, we released blue balloons into the sky for Aidan, and our family and friends around the world did the same.
Aidan was a truly amazing little person. He fought so hard to live, and brought so much joy and happiness into our lives during the short time he was with us. We are lucky to be a Mummy and Daddy to such a brave, special little boy. We hope that through Aidan’s Elephants, we can make sure that our son’s short life has meaning, and that we can help the parents of other babies who left too soon.
If you would like to find out more about our story, please get in touch with us by emailing: firstname.lastname@example.org
You can find further information about OTC Deficiency here.