Remembering SMA Angels
Tribute - Rowan Macie Poole - 26th May 2011 - 23rd November 2012
Rowan was born on the 26th May 2011, 11 days early in a birthing pool weighing a tiny 5lbs 6oz. For the first 6 months of her life everything seemed normal. However, at 10 months old Rowan was diagnosed with Spinal Muscular Atrophy type 1b after we had noticed she wasn't meeting her physical milestones, she couldn't roll over or sit up and showed no interest in holding objects nor could she hold her head up fully. Rowan had however been breastfed since birth up to 10 months old and was fully weaned onto solid foods.
Even with this condition Rowan was lucky enough to have movement in her arms and face and had the most amazing repertoire of sounds and chatter. She enjoyed life with the assistance of a special chair that helped her to play and be involved in the world. Rowan was a lively and bright baby, and always had a smile and wave for everyone. She loved bubbles, reading, bath time and swimming.
Rowan became poorly for the first time in June 2012 she was treated in our local district hospital for pneumonia and thankfully responded to treatment fantastically, after 11 days on the Children’ ward we were discharged.
Rowan was back to her usual chatty self, she had to have a Nasal gastric feeding tube fitted as she was refusing food but everything went back to our ‘normal’. Again on the 20th September Rowan became unwell, early on Friday 21st September it was decided that Rowan was very ill and that the best option was to ventilate her, she was then sent to a Specialist children’s hospital.
Rowan proved every doctor wrong during her stay in ICU and came off the ventilator and successfully onto a non invasive ventilator. Rowan wasn't quite back to her usual self, there were several occasions where her oxygen levels would dip and she would need manual bagging to help her breath and lots of suction. At this point the doctors told us that without re-ventilating her there was little they could do and discussed moving us to the local hospice.
We arrived at Bluebell Wood Children’s hospice on Tuesday 2nd October 2012 here we made the heart breaking decision to remove all of Rowan’s breathing support. We decided that she was just as likely to block her airway with the mask on as she was to struggle with it off and if we only had a little time left as a family we wanted to enjoy it as comfortably as possible without equipment coming between us. Everyone surrounded her in her small room and said our final goodbyes.
It was suggested that Rowan might like a bath as she hadn't had a proper bath for nearly two weeks, everything was prepared and she loved it. It brought her round so well and within minutes she was attempting a little splash.
We started to consider going home, and after a 2 week stay we did just that.
Once again things returned to our ‘normal’ however neither of us went back to work we wanted to spend as much time with Rowan as possible. The suction machine (our Nu Nu) became our best friend and we were also given a nebuliser machine to try and help with Rowans secretions. Both pieces of equipment saved Rowans life on numerous occasions along with routine chest physio. We took it in turns, having a night on and a night off to be by Rowan’s side in case she struggled to breathe.
On Friday the 23rd November following an unsettled night, we awoke and looked outside – clear blue sky and sunshine. I knew today would be the day that Rowan left us.
Later that day while cuddled on the sofa with both of us by her side, Rowan took her last breath and gently let go of my finger. She passed away peacefully in her own home surrounded by love.
Rowan delighted everyone she met and enjoyed her short life to the full. She made the world more fun, more interesting, more beautiful and above all, more joyful for everyone close to her.
She will never be forgotten.
For Rowans full story please visit www.teamrowan.moonfruit.com and http://www.bluebellwood.org/rowans-story/
To make a donation please visit www.justgiving.com/teams/teamrowan
Follow us on Twitter @Teamrowan_sma
Even with this condition Rowan was lucky enough to have movement in her arms and face and had the most amazing repertoire of sounds and chatter. She enjoyed life with the assistance of a special chair that helped her to play and be involved in the world. Rowan was a lively and bright baby, and always had a smile and wave for everyone. She loved bubbles, reading, bath time and swimming.
Rowan became poorly for the first time in June 2012 she was treated in our local district hospital for pneumonia and thankfully responded to treatment fantastically, after 11 days on the Children’ ward we were discharged.
Rowan was back to her usual chatty self, she had to have a Nasal gastric feeding tube fitted as she was refusing food but everything went back to our ‘normal’. Again on the 20th September Rowan became unwell, early on Friday 21st September it was decided that Rowan was very ill and that the best option was to ventilate her, she was then sent to a Specialist children’s hospital.
Rowan proved every doctor wrong during her stay in ICU and came off the ventilator and successfully onto a non invasive ventilator. Rowan wasn't quite back to her usual self, there were several occasions where her oxygen levels would dip and she would need manual bagging to help her breath and lots of suction. At this point the doctors told us that without re-ventilating her there was little they could do and discussed moving us to the local hospice.
We arrived at Bluebell Wood Children’s hospice on Tuesday 2nd October 2012 here we made the heart breaking decision to remove all of Rowan’s breathing support. We decided that she was just as likely to block her airway with the mask on as she was to struggle with it off and if we only had a little time left as a family we wanted to enjoy it as comfortably as possible without equipment coming between us. Everyone surrounded her in her small room and said our final goodbyes.
It was suggested that Rowan might like a bath as she hadn't had a proper bath for nearly two weeks, everything was prepared and she loved it. It brought her round so well and within minutes she was attempting a little splash.
We started to consider going home, and after a 2 week stay we did just that.
Once again things returned to our ‘normal’ however neither of us went back to work we wanted to spend as much time with Rowan as possible. The suction machine (our Nu Nu) became our best friend and we were also given a nebuliser machine to try and help with Rowans secretions. Both pieces of equipment saved Rowans life on numerous occasions along with routine chest physio. We took it in turns, having a night on and a night off to be by Rowan’s side in case she struggled to breathe.
On Friday the 23rd November following an unsettled night, we awoke and looked outside – clear blue sky and sunshine. I knew today would be the day that Rowan left us.
Later that day while cuddled on the sofa with both of us by her side, Rowan took her last breath and gently let go of my finger. She passed away peacefully in her own home surrounded by love.
Rowan delighted everyone she met and enjoyed her short life to the full. She made the world more fun, more interesting, more beautiful and above all, more joyful for everyone close to her.
She will never be forgotten.
For Rowans full story please visit www.teamrowan.moonfruit.com and http://www.bluebellwood.org/rowans-story/
To make a donation please visit www.justgiving.com/teams/teamrowan
Follow us on Twitter @Teamrowan_sma
Tribute - Jaiden Dale - 14th January 2012 - 28th September 2012
Saturday 14th January 2012 at 3.21am we were blessed with a gorgeous baby boy who we named Jaiden Dale.
Jaiden was good as gold, a little angel from the word go, he was a great sleeper, he loved his bottles - he was a chunky little monkey so what could we expect! He could brighten a room up with his cheeky smile and glisten in his eyes. Even strangers would always comment on his big beaming smile! He certainly was a beautiful baby boy.
At 5 months old I was on my way to take Jaiden to the hospital to get checked over as the doctor and health visitor noticed he wasn't managing tasks such as holding his head up etc. I was driving and noticed Jaiden had turned blue and was struggling to breathe! I pulled over and got him out his baby seat, desperately tried to bring him back round. I waited for ambulance which felt a lifetime I fortunately managed to save Jaiden before the ambulance arrived. They took us straight to north tees hospital where Jaiden had a lot of blood tests etc. After a week they then transferred us to Newcastle RVI hospital where we were told the destroying news that Jaiden had SMA type 1. I was in denial I was convinced they got it wrong, they had made a mistake! I was so positive that Jaiden would overcome it I wasn't listening to the words "there is no cure"
We stayed in the RVI for 5 weeks until we finally got our little man home where he belonged, we chose to care for Jaiden ourself. I done his physio twice a day, medicines and feeds daily. Suction was given to Jaiden when he struggled with secretions which we noticed were becoming more & more regular.
Jaiden took poorly and we found ourselves back in North Tees Hospital where we were told Jaiden had pneumonia. They gave us some strong antibiotics and luckily we got to take Jaiden straight home. I thought he fought it off once he will do it again. But this was the time Jaiden wouldn't be able to fight it off.
Jaiden was struggling so badly. Suction was becoming far too regular and didn't seem to be helping anymore. He couldn't sleep as he couldn't go long enough without getting suctioned. His oxygen machines were now set so high and his alarms sounded where I read his oxygen level as 9%. I suctioned, turned oxygen right up even added the portable oxygen to him. We had our emergency plan we knew what to do to help Jaiden as much as we could.
Time was going by, Jaiden was no better he now had the bag & mask on aswell as his normal oxygen & the ambulance was on their way. Jaiden was being so strong! We arrived at Sunderland hospital where nurses done their best to help Jaiden but the dreaded moment arrived when the question was asked what do we want to do. For some reason I was still in denial but after a few minutes of talking the reality hit. We released Jaiden from all equipment, I got him in my arms where I enjoyed those precious cuddles, I sang his favourite song to him & the little solider that he is managed to give one final cheeky smile before closing those gorgeous blue eyes.
Jaiden will always always be loved, remembered and cherished......... xXx
Jaiden was good as gold, a little angel from the word go, he was a great sleeper, he loved his bottles - he was a chunky little monkey so what could we expect! He could brighten a room up with his cheeky smile and glisten in his eyes. Even strangers would always comment on his big beaming smile! He certainly was a beautiful baby boy.
At 5 months old I was on my way to take Jaiden to the hospital to get checked over as the doctor and health visitor noticed he wasn't managing tasks such as holding his head up etc. I was driving and noticed Jaiden had turned blue and was struggling to breathe! I pulled over and got him out his baby seat, desperately tried to bring him back round. I waited for ambulance which felt a lifetime I fortunately managed to save Jaiden before the ambulance arrived. They took us straight to north tees hospital where Jaiden had a lot of blood tests etc. After a week they then transferred us to Newcastle RVI hospital where we were told the destroying news that Jaiden had SMA type 1. I was in denial I was convinced they got it wrong, they had made a mistake! I was so positive that Jaiden would overcome it I wasn't listening to the words "there is no cure"
We stayed in the RVI for 5 weeks until we finally got our little man home where he belonged, we chose to care for Jaiden ourself. I done his physio twice a day, medicines and feeds daily. Suction was given to Jaiden when he struggled with secretions which we noticed were becoming more & more regular.
Jaiden took poorly and we found ourselves back in North Tees Hospital where we were told Jaiden had pneumonia. They gave us some strong antibiotics and luckily we got to take Jaiden straight home. I thought he fought it off once he will do it again. But this was the time Jaiden wouldn't be able to fight it off.
Jaiden was struggling so badly. Suction was becoming far too regular and didn't seem to be helping anymore. He couldn't sleep as he couldn't go long enough without getting suctioned. His oxygen machines were now set so high and his alarms sounded where I read his oxygen level as 9%. I suctioned, turned oxygen right up even added the portable oxygen to him. We had our emergency plan we knew what to do to help Jaiden as much as we could.
Time was going by, Jaiden was no better he now had the bag & mask on aswell as his normal oxygen & the ambulance was on their way. Jaiden was being so strong! We arrived at Sunderland hospital where nurses done their best to help Jaiden but the dreaded moment arrived when the question was asked what do we want to do. For some reason I was still in denial but after a few minutes of talking the reality hit. We released Jaiden from all equipment, I got him in my arms where I enjoyed those precious cuddles, I sang his favourite song to him & the little solider that he is managed to give one final cheeky smile before closing those gorgeous blue eyes.
Jaiden will always always be loved, remembered and cherished......... xXx