Séan's Story

We had just moved into our new home and everything in life seemed like an adventure. We were in love, we had a beautiful new home and on the 16th June I found out I was pregnant, but I knew before I even went to the doctors. 3 months before hand I had a miscarriage at 12 weeks and all I had wanted was a baby to love and adore and to make our perfect life complete. So when I found out I was expecting again I was absolutely thrilled and so was my partner.

I had morning sickness all day and every day but I thought that was the sign of a healthy baby as I had no previous sickness whilst pregnant before I miscarried. I sheltered away from world as such because I was protective of my growing baby. Any ache or pain I was at the doctors, I imagined a boy or a girl, and who would they look like. It was a hard pregnancy with many urinary tracts along with bad skin and back pains and I worked overtime as our new house had a fine hefty mortgage. At 35 weeks I went into hospital with swollen legs and feet and they told me that I had 5 pluses of protein in my urine and that I would need to be induced as I had a bad case of pre eclampsia. Even though the doctors were worried I was so excited that I was going to meet my baby. We had chosen Sophie for a girl and Séan for a boy. It was going to be the first grandchild on both sides so the excitement was tremendous for the new arrival. I was only 20, so as you can imagine, I was terrified about becoming a first time mum but so excited that I was bringing a baby into the world. I knew that the love that I would feel would be of sheer honour and joy of what God had given me.

At 1.05am on Mother's Day, 2nd March, my little boy came into the world weighing 5 pounds 3 ounces with a big head of black hair, (I had never suffered with heart burn) so that was a shock. I can remember how tired I was but so happy that my baby was here. He was immediately taken to the neo natal unit as he was premature by 4 weeks, and they say babies stop growing when the mother has severe pre eclampsia. When they wheeled me into the neo natal to see him I remember the joy I had felt that it said "male of Joanne Browne" and that I couldn't believe that something so tiny and wonderful was given to me, and that I had been given this perfect baby. Celebrations went on for days, but that first night up in hospital I was so scared of him. Looking back now I grew up so fast myself.


Séan was perfect, after 3 days he developed Jaundice and was taking back to the neo natal. I, as you can imagine, was devastated, although exhausted because I was a new mum. He started developing sleep apneas, but they did all the examinations possible and treated him with a normal antibiotic for a cold. I had to leave the hospital without Séan and it broke my heart, I lay weeping for him at night after we had to leave the hospital. After 5 days they said all the tests were clear and we were allowed to take him home, I was as proud and happy as you can imagine. I changed him and bathed him at home, and my life was perfect. I adored being his mum, but for some reason deep down in my heart I felt something was wrong. Over Séan being premature he had many check ups and they were always very happy with his weight, feeding and general progress, and once they were happy I had no reason to question them. I lived blissfully happy for 6 months and Séan slept in the bed every night with me and his dad. I absolutely ruined him, and he knew at every whinge I would give into him After his dad would leave for work, while I was on maternity leave, I found that he was as much my friend as my son, and my life before was a distant memory. I loved being his mum and having him rely on me 100%. He was spoilt wherever he went as he was the first great grandchild on both sides. His father was an only child and I only have one brother, and all grandparents were alive.



My father was involved in a local sports club and he said that the physio there he was almost positive his wife worked in the baby ward as a doctor in our local hospital. At this stage I just wanted to have Séan seen. I had self diagnosed him as having low muscle tone, hypotonia, and worse case scenario I thought he may not walk, and that was not even worth thinking about. The physios wife, Deirdre, was in fact a baby doctor and she called me back and agreed to see Séan. I met her in her husband's surgery and I knew then that something was wrong. The following day she arranged an appointment in the Cork university hospital with the main neurologist. I went home and prayed that everything would be ok. I gazed at him as he slept. At this stage when he woke in the mornings and I was still asleep he would stroke my face until I woke, and the minute I would open my eyes he would laugh, laugh so happily.

That Monday my best friend, Michelle, accompanied me to his appointment. Séan's dad had work and my parents were on their 25th wedding anniversary holiday in Lanzarote. As I walked into the hospital that Monday 6th October I cried uncontrollably that Séan may have to stay in over night for tests and the thought of him having to stay in hospital was unbearable. I met the neuroligists understudy, Adrian, and he asked me questions about Séan's lack of leg movement, and asked did he kick a lot when I carried him, and could there be any chance myself and Séan's dad could be related. I answered the answers whilst laughing at the idea of them thinking we were related. The neuroligist came in and looked at him, Dr Olivia O'Mahony a fantastic, brilliant doctor. She looked at me with this lost and empty look on her face, and replied that Séan was a very, very weak little man, and what time would my partner finish work as she needed him to come up straight away to talk to us together. They then brought me down to a nerve and muscle specialist. I knew that my worst case scenario of Séan never walking was nothing to what they were going to tell me.

I watched as Séan lay on my legs as they poked and prodded him. Séan's dad arrived and after maybe 10 minutes of waiting Olivia came back and told us that she was 95% positive Séan had Werdning Hoffman disease, otherwise known as SMA and she was fairly sure it was Type 1. I said SMA is a formula milk, and she said yes but it's also a genetic terminal illness. I asked her straightaway what was the life span and she replied with the most being 18 months. I remember as she spoke the tears felt like fire on my face and I watched as Séan slept peacefully in the cot surrounded by the new Winnie the Pooh's I had bought him as a "I'm sorry" present for him having to go into hospital. The neurologist had her hand on my shoulder saying it was not my fault that it was just unfortunate we both had the SMA gene, and that they would make Séan very comfortable when the time came.

That night I remember clearly, after all our family left the hospital, I started grieving my baby as he lay well, smiling and cooing in my arms. He slept and I drowned him in my tears. I vowed I would tell the world for all my days how wonderful he was and how truly grateful I was to have him. We left the hospital the following day after his diagnoses, and continued with our lives as if that day had been a nightmare. My parents flew home from Lanzarote, and we were told that a sniffle to Séan, although never sick, could be fatal. I even went back to work, and we continued living in a bubble.


I bathed Séan every night and changed his outfits numerous times a day. I would watch him sleep every night and turn my pillow upside down as the tears would seep through. I smelt him and smelt him until I had his smell fresh every time. We took Séan to the hospital on day visits and they were very happy with him and said that the next 10 weeks would tell a lot and we would need to have the equipment, suction etc ready for our home. The doctors organised for Séan to be in for 3 nights in hospital so they could show us how to suction, and put in the tube for when the time came. Even though he was very well, he got injections to boost his immune system.

I met a girl from Cork, Susan, who I am now very good friends with her. Her baby, Owen, had died a few years beforehand at 5 months from SMA Type 1, bar her there was no one else in Cork who I know of. I had my friend, Elaine, get Séan a "big boys" outfit on a trip to New York. Unknown to anyone, I was preparing, and nights while I watched Séan asleep I prepared for the day , night, he would be taking, and where he would be buried and how I would plan the mass and honour him.

Seven weeks after he was diagnosed I went to work for a few hours and my mum minded Séan I rang to ask her how he was and she said she thought I was best off bringing him to the doctor. We tip toed around Séan's condition and decided that talking to one another about what was going to happen to our handsome man was too painful to imagine. My parents are only 47, my mother had been made redundant from her job after 27 years the Friday before I had Séan so they were thrilled and proud to be grandparents. So that Tuesday I came out of work and the minute I saw him, in his In The Night Garden tracksuit, I saw his tired little face. My little boy, who was so happy for 9 months, looked tired and fed up.

I took Séan to the hospital straightaway with those tears of fire falling from my eyes, and I could feel the pain and agony of my little boys path hitting as a reality. He was breathing so heavy and all I wanted to do was give up my own life to make him well. They confirmed he had a chest infection and would start immediate antibiotics. The doctors were happy he was improved and that night he even had some sunshine orange and juice. His dad left the hospital and said he would be up in the morning. Séan wouldn't settle and was absolutely exhausted, his nurse, Christine, said if he had some sleep he would be ok. At 12am she decided to tube feed him for the first time, an ounce of milk, to settle him. He aspirated after it and the doctor ran down and took him away as his heart rate was dropping. He was so uncomfortable looking and I couldn't make it right. I prayed to God to help him. I begged and pleaded. They revived him and said if he slept he would be fine, he later aspirated again and this result in a collapsed lung. Séan just just lay there with this "just let me go mum" look in his face and breathed very heavily. His neurologist arrived and I asked her what should we do and she replied that she thought it best to give him morphine and if he was ready to go he would. He lay in the resuscitation room, and I smelt him head to toe. I had lived seven weeks of the night mare that was arriving.

I went out into the hall of the hospital and kneeled and prayed to God to take him and to save him from anymore pain. I went back in and told Séan that if he was ready to go, then he should. My family arrived and the doctors gave Séan the morphine, the nurse sat him in my arms and I rocked him in my arms as he left the world, he sweated from the morphine. He passed into heaven at 9.05 am and whilst I rocked him I imagined how he would have looked on his 1st birthday, communion, confirmation and as a man. I remember the day he was born and I told him that we would walk together again. I bathed him and put his johnsons on him and dressed in the outfit from New York. I slept with him for his final 2 nights, and I buried him with my father's parents.

The day of Séan's funeral I did what I promised him. I stood up and told the church how thankful I was to have had him in my life. I would live my life again and again to have those 9 months with Séan each time.

I believe all babies choose who their mothers are. I don't think its God's work that babies like Séan with SMA are taken, I believe that they have to be born and they chose us to be their Mothers.

Above all I want to thank my Little boy Séan for showing me the true meaning of love, and for filling my life and soul with happiness. You were and will always be my biggest achievement of this world.

I love you my little man,
Sleep tight and look after us all,
We'll walk together again one day, now that we walked once together, well never walk alone,