The Journey of life for my treasure, the path we travelled together.
Seán James Browne-Keating
Sunrise 2nd March 2008 - Sunset 26th November 2008
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 July I found out I was pregnant (but I knew before I even went to the doctor). 3 months beforehand I had 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 that 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 had no sickness in my previous pregnancy. I sheltered away from world as such because I was protective of my growing baby. Any ache or pain and 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 tract infections along with bad skin and backpain. 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 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 see my baby.
We had chosen Sophie for a girl and Seán 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, and I knew that the love that I would feel would be of sheer honour and joy for 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 neonatal unit as he was 4 weeks premature, and they say babies stop growing when the mother has severe pre-eclampsia. When they wheeled me into the neonatal unit to see him I remember the joy I had felt that it said "male of Joanne Browne". I couldn't believe that something so tiny and wonderful had been given to me, and that I had been given this perfect baby. Celebrations went on for days, but that first night in hospital I was so scared of him. Looking back now I grew up so fast myself.
Seán was perfect, but after 3 days he developed jaundice and was taken back to the neonatal unit. I was devastated as you can imagine, although exhausted because I was a new mum. He started developing sleep apnoea, but they did all the examinations possible and treated him with antibiotics for a cold. I had to leave the hospital without Seán and it broke my heart. I lay weeping for him at night after we had to leave the hospital but 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.
As Seán had been premature he had many check-ups and the doctors 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 happily for 6 months and Seán slept in bed every night with me and his Dad. I absolutely ruined him, and he knew that every time he winged I would give in to 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 great grandparents were alive.
Seán drank ounces of milk and ate bowls of porridge, potatoes, sunshine orange and whatever you gave him. His only problem was that he was floppy. I didn't realise how floppy he actually was until I returned to work after my maternity leave. A few of my work colleagues had had babies around the same time as I had Seán, One of my colleagues, Claire, came in with her little boy and he was literally thumping her in the face; I was still supporting Seán's head. It was then I knew that something was drastically wrong. I went to my local G.P. who had seen Seán on various occasions before and she agreed that his progress was slow. I asked her to arrange a private appointment for Seán which she replied would follow in 10 weeks. I knew deep in my heart that something was wrong - I spent sleepless nights watching him sleeping.
My father was involved in a local sports club and he said he was almost positive that the wife of the physio there worked as a doctor on the paediatric ward of our local hospital. At this stage I just wanted Seán to be seen - I had self diagnosed him as having low muscle tone (hypotonia) - I even met a mum whose daughter had poor muscle tone, and worse case scenario I thought he may not walk and that wasn't even worth thinking about. The physio's wife Deirdre was in fact a paediatrician and she called me back and agreed to see Seán. I met her in her husband's surgery and I knew then that something was wrong. The following day she arranged a appointment at the Cork University Hospital with the main neurologist. I went home and prayed that everything would be okay. 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 opened my eyes he would laugh, laugh so happily.
That Monday my best friend Michelle accompanied me to his appointment. Seán'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 Seán may have to stay in over night for tests and the thought of him having to stay in hospital was unbearable. I met the neurologist's understudy, Adrian, and he asked me questions about Seán's lack of leg movement, and asked whether he kicked a lot when I carried him, and could there be any chance Seán's Dad and I could be related. I answered the questions whilst laughing at the idea of them thinking we were related. The neurologist came in and looked at him. Dr Olivia O'Mahony, a fantastic, brilliant doctor, looked at me with this lost and empty look on her face, and replied that Seán was a very, very weak little man, and asked what time my partner would 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 Seán never walking was nothing to what they were going to tell me. I watched as Seán lay on my legs as they poked and prodded him. Seán's Dad arrived and after maybe 10 minutes of waiting Olivia came back and told us that she was 95% positive that Seán had Werdnig Hoffman disease, otherwise known as S.M.A and she was fairly sure it was Type one. I said S.M.A is a formula milk, and she said yes, but it's also a genetic terminal illness. I asked her straight away what the life span was and she replied that the most would be 18 months. I remember as she spoke the tears felt like fire on my face and I watched as Seán slept peacefully in the cot surrounded by the new Winnie the Poohs 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 S.M.A gene, and that they would make Seán very comfortable when the time came. That night I remember clearly, after all our family left the hospital, I started grieving for 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 day after his diagnosis, and continued with our lives as if that day had been a nightmare. My parents flew home from Lanzarote. We were told that a sniffle to Seán, although never sick, could be fatal. I even went back to work, and we continued living in a bubble. I bathed Seán every night and changed his outfits numerous times a day, and 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 Seán 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 Seán 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 baby Owen had died a few years beforehand at 5 months from Type 1 S.M.A, but there was no one else in Cork who I knew of.
I asked my friend Elaine to get Seán a "big boys" outfit on a trip to New York, unbeknown to anyone. I was preparing and nights while I watched Seán sleeping I prepared for the day , or night, he would be taken, and where he would be buried, and how I would plan the mass and honour him.
7 weeks after he was diagnosed, I went to work for a few hours, as my Mum used to mind Seán while I worked. I rang to ask her how he was and she said she thought I was best off taking him to the doctor. We tiptoed around Seán'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 Seán was born, so they were thrilled and proud to be grand parents. So that Tuesday I came out of work and the minute I saw him in his Iggle Piggle Night Garden tracksuit with his tired little face, my little boy who was so happy for 9 months, looking tired and fed up, I brought him to the hospital straight away with those tears of fire falling from my eyes. I could feel the pain and agony of my little boy's path hitting as a reality. He was breathing so heavily and all I wanted to do was give up my own life to make him well. It was confirmed that he had a chest infection and would start antibiotics immediately. The doctors were happy he was improving 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.
Seán wouldn't settle and was absolutely exhausted. His nurse Christine said if he had some sleep he would be okay. At 12 a.m. she decided to tube feed him for the first time an ounce of milk to settle him. He aspirated after the feed. The doctor ran down and took him away as his heart rate was dropping. Seán looked so uncomfortable 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. Later he aspirated again and this resulted in a collapsed lung. Seán just lay there with this 'just let me go Mum' look on his face and was breathing very heavily. His neurologist arrived and I asked her what we should do. 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 smelled him head to toe. I had lived seven weeks of the nightmare. I went out into the hall of the hospital and knelt and prayed to God to take him and to save him from any more pain. I went back in and told Seán that if he was ready to go, then he should. My family arrived and the doctors gave Seán the morphine. He sweated from the morphine and the nurse sat him in my arms and I rocked him in my arms as he left the world. He passed into heaven at 9.05 a.m. and whilst I rocked him I imagined how he would have looked on his first birthday, communion confirmation and as a man. I remembered the day he was born and I told him that we would walk together again. I bathed him, put his Johnsons on him and dressed him in the outfit from New York. I slept with him for his final 2 nights, and I buried him with my father's parents. On the day of his funeral I did what I had 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 Seán each time. I believe all babies choose who their mothers are. I don't think it's God's work that babies like Seán with S.M.A are taken. I believe that they have to be born and they choose us to be their mothers.
I am so grateful that Seán never suffered and during his 9 months he was so happy and healthy and I was always him mum and not his nurse. I was saved so much heartache - I never had to watch Seán in pain and have all the equipment and suction. All my memories of him are happy ones. I know Seán is, and always will be, with me.
I want to thank Hilary Adams from the Jennifer Trust for her help and support. I want to thank all the parents who have helped me and continue to do so during this journey of loss, heartache, and pain, and my family - my mother Catherine, my father John and my brother Graeme, my grandmother, aunts and uncles, for being my rock, along with my fantastic friends, and work colleagues. But above all I want to thank my little boy Seán for showing me the true meaning of love and for filling my life and soul with happiness.
See Also
Joanne's tribute to Seán |
