Joanna's story
Joanna Rose was our second beautiful daughter, who had Type I Spinal Muscular Atrophy. She finally passed away on 18 July 1999, aged almost nine months, whilst at Little Bridge House, our local children's hospice. This page tells her story.
This photo of our beloved little girl, Joanna Rose, was taken at Little Bridge House in June 1999. The black boxes are some sort of sensors; they were attached to a box of electronic tricks and a loudspeaker. As she moves her arms around, the sensors detect the motion and the proximity of her hands and different sounds are produced. Joanna found this quite stimulating and in the photo she is staring at the loudspeaker, just out of the picture.
This photo of our beloved little girl, Joanna Rose, was taken at Little Bridge House in June 1999. The black boxes are some sort of sensors; they were attached to a box of electronic tricks and a loudspeaker. As she moves her arms around, the sensors detect the motion and the proximity of her hands and different sounds are produced. Joanna found this quite stimulating and in the photo she is staring at the loudspeaker, just out of the picture.
Making music with proximity sensors at Little Bridge House
This is Joanna's story. This article was included in the Jennifer Trust for Spinal Muscular Atrophy's magazine, 'Holding Hands', and is reproduced here in full.
Our second daughter was born on the 23/10/1998 and we called her Joanna. It was her big sister Rhianna's second birthday the day after Joanna was born, and we were thrilled to have two little girls and life was great. Joanna was a very happy baby, very content to sit in her car seat rocker and watch family life. Soon it was Christmas, and then the New Year. Joanna was gaining weight nicely, but was a lot quieter and less active than her sister ever was, but babies are very different. Rhianna had crawled before six months so I put Joanna's quietness down to her being a second baby, I was more relaxed, she had entertainment to watch in the shape of Rhianna; Joanna was going to be our teenage rebel.
Joanna had by now had her six-week check and no problems were found. With two young children life was hectic, I took Joanna to her fortnightly weight checks and all appeared well, she was breastfeeding and gaining weight well. Then suddenly in early February our health visitor noticed Joanna's lack of movement and sent me to see our GP straight away. The GP examined Joanna and said she would keep a close eye on her progress but didn't seem too concerned. Over the next few weeks Joanna's lack of movement and lack of head control became more and more apparent. Joanna was referred to a paediatrician. Not one of our health visitors or GPs could give us any idea what it could be.
We saw the paediatrician on 31 March and he was very concerned about Joanna. He still couldn't or wouldn't give us any indication of what it could be but I didn't for one minute think it could be life-threatening. However I did ask and the consultant told us it wasn't at this stage, but he said he would like to refer Joanna to Bristol hospital. The following day he phoned us to say there was a new blood test available and to bring Joanna down next week to Torbay hospital when we were booked for physiotherapy.
We got to the paediatrician on 7 April. Joanna was now five and half months, we were hopeful - at last it seemed someone knew what might be wrong, people had been telling us not to worry, that there is so much that can be done these days for babies and children. Nothing could prepare us for what we were told next. The paediatrician suspected Joanna had Spinal Muscular Atrophy (SMA) and if she did, she would not live to see her second birthday; realistically she would not see her first birthday. When you are told something like this your whole world falls apart - all your hopes and dreams for the future are taken away, you can hope the doctors might be wrong but you realise this is unlikely.
Our second daughter was born on the 23/10/1998 and we called her Joanna. It was her big sister Rhianna's second birthday the day after Joanna was born, and we were thrilled to have two little girls and life was great. Joanna was a very happy baby, very content to sit in her car seat rocker and watch family life. Soon it was Christmas, and then the New Year. Joanna was gaining weight nicely, but was a lot quieter and less active than her sister ever was, but babies are very different. Rhianna had crawled before six months so I put Joanna's quietness down to her being a second baby, I was more relaxed, she had entertainment to watch in the shape of Rhianna; Joanna was going to be our teenage rebel.
Joanna had by now had her six-week check and no problems were found. With two young children life was hectic, I took Joanna to her fortnightly weight checks and all appeared well, she was breastfeeding and gaining weight well. Then suddenly in early February our health visitor noticed Joanna's lack of movement and sent me to see our GP straight away. The GP examined Joanna and said she would keep a close eye on her progress but didn't seem too concerned. Over the next few weeks Joanna's lack of movement and lack of head control became more and more apparent. Joanna was referred to a paediatrician. Not one of our health visitors or GPs could give us any idea what it could be.
We saw the paediatrician on 31 March and he was very concerned about Joanna. He still couldn't or wouldn't give us any indication of what it could be but I didn't for one minute think it could be life-threatening. However I did ask and the consultant told us it wasn't at this stage, but he said he would like to refer Joanna to Bristol hospital. The following day he phoned us to say there was a new blood test available and to bring Joanna down next week to Torbay hospital when we were booked for physiotherapy.
We got to the paediatrician on 7 April. Joanna was now five and half months, we were hopeful - at last it seemed someone knew what might be wrong, people had been telling us not to worry, that there is so much that can be done these days for babies and children. Nothing could prepare us for what we were told next. The paediatrician suspected Joanna had Spinal Muscular Atrophy (SMA) and if she did, she would not live to see her second birthday; realistically she would not see her first birthday. When you are told something like this your whole world falls apart - all your hopes and dreams for the future are taken away, you can hope the doctors might be wrong but you realise this is unlikely.
A watery smile after a soak in the bath...
After being told what they thought was wrong with Joanna, she had to have a blood test to confirm whether or not she did have SMA. This result would take ten to fourteen days. In this time we got a lot of information on SMA from the JTSMA web site, after reading this we felt sure this is what was wrong with Joanna. One sentence summed up Joanna: "what they seem unable to do physically, they appear to compensate for with facial expressions, particularly their beautiful eyes and smiling faces". Complete devastation is what you feel when you are told your baby will die and nothing short of a miracle will stop it.
We got the final result on 22 April 1999 - Joanna had Type 1 SMA. We had already started to tell friends and family about Joanna's condition, family and friends alike were very shocked, nobody had heard of SMA, even our health visitor and GPs had not heard of it, let alone seen it. By the time we saw the paediatrician we knew Joanna had a major problem but not something which was going to mean our baby daughter would die most likely before she was a year old.
After being told all this we felt the only thing we could do was take each day we had with Joanna as it came along and make the very most of the time we had with her. Joanna was still very happy, very alert and had the most amazing blue eyes that would follow you everywhere. We took her for days out; we took her to the zoo, the Shire Horse centre, to the shops. Joanna loved being outdoors and meeting people. Complete strangers who didn't know about Joanna's condition would comment on her beautiful and knowing eyes. We carried on with life as normally as we could.
Joanna had a smile for everyone and was quite content. We visited Torbay hospital for physiotherapy and hydrotherapy and saw the consultant who would see how Joanna was keeping. During May Joanna was feeding well, a mixture of breastfeeding and solids - sometimes as many as five jars a day.
We got the final result on 22 April 1999 - Joanna had Type 1 SMA. We had already started to tell friends and family about Joanna's condition, family and friends alike were very shocked, nobody had heard of SMA, even our health visitor and GPs had not heard of it, let alone seen it. By the time we saw the paediatrician we knew Joanna had a major problem but not something which was going to mean our baby daughter would die most likely before she was a year old.
After being told all this we felt the only thing we could do was take each day we had with Joanna as it came along and make the very most of the time we had with her. Joanna was still very happy, very alert and had the most amazing blue eyes that would follow you everywhere. We took her for days out; we took her to the zoo, the Shire Horse centre, to the shops. Joanna loved being outdoors and meeting people. Complete strangers who didn't know about Joanna's condition would comment on her beautiful and knowing eyes. We carried on with life as normally as we could.
Joanna had a smile for everyone and was quite content. We visited Torbay hospital for physiotherapy and hydrotherapy and saw the consultant who would see how Joanna was keeping. During May Joanna was feeding well, a mixture of breastfeeding and solids - sometimes as many as five jars a day.
Well, a girl has to look after her complexion!
Joanna loved to watch Rhianna, and Rhianna loved her sister. She would sit beside her holding her hand, playing 'round and round the garden' and giving her kisses. They loved playing in the car, laughing at each other in their car seats, which were diagonally opposite. Joanna needed a lot of our attention and Rhianna was never jealous. Then at the beginning of June, Joanna wasn't her happy self. I took her to our GP who sent us into Torbay hospital. Joanna had a chest infection, we were in hospital for 2 days and then she picked up. We came home and 'smiley Jo' was back, and she did not go into hospital again. However, she was now finding her solids too much, swallowing was becoming harder.
We had been put in contact with our local children's hospice, "Little Bridge House", and a visit was planned for 11 June for the weekend. By this time Joanna was hardly taking any solids, I was still breastfeeding her but we had no idea as to how much food she was taking. We were becoming very worried about Joanna's feeding and her weight was dropping quite drastically.
We arrived at the hospice on the Friday and then on the Saturday Joanna took a turn for the worse, so she had a feeding tube put into her stomach via her nose to enable her to take her food. It was something we had talked about, but seemed very daunting. The day Joanna had the tube put in she was very poorly, everyone was very concerned about her but Joanna amazed everyone by picking up and by that evening she was in the Jacuzzi. The following day 'smiley Jo' was back again. Instead of staying a weekend we stayed a week, in which time the carers at LBH got to know Joanna. They had friendly arguments over who would care for her during their shifts, and we had a great time as a family especially in the Jacuzzi with Joanna. It was great to meet people who had cared for other SMA babies and could tell us a little about what to expect and had the time to listen to us, and taught us how to tube feed Joanna. This made Joanna's life, and ours, much easier and happier. We wished we had done it sooner - although it sounded very daunting it was something we picked up quickly, especially Paul using a stethoscope!
We had been put in contact with our local children's hospice, "Little Bridge House", and a visit was planned for 11 June for the weekend. By this time Joanna was hardly taking any solids, I was still breastfeeding her but we had no idea as to how much food she was taking. We were becoming very worried about Joanna's feeding and her weight was dropping quite drastically.
We arrived at the hospice on the Friday and then on the Saturday Joanna took a turn for the worse, so she had a feeding tube put into her stomach via her nose to enable her to take her food. It was something we had talked about, but seemed very daunting. The day Joanna had the tube put in she was very poorly, everyone was very concerned about her but Joanna amazed everyone by picking up and by that evening she was in the Jacuzzi. The following day 'smiley Jo' was back again. Instead of staying a weekend we stayed a week, in which time the carers at LBH got to know Joanna. They had friendly arguments over who would care for her during their shifts, and we had a great time as a family especially in the Jacuzzi with Joanna. It was great to meet people who had cared for other SMA babies and could tell us a little about what to expect and had the time to listen to us, and taught us how to tube feed Joanna. This made Joanna's life, and ours, much easier and happier. We wished we had done it sooner - although it sounded very daunting it was something we picked up quickly, especially Paul using a stethoscope!
Jo's big sister feeding her chocolate at Easter!!
We went home and got on well with the tube feeding. Joanna was still breastfeeding at night to get her to sleep, which always worked well.
Joanna was happy and we had a good support system set up by our health visitor and GP who arranged a rota to come and see Joanna each day.
For the next couple of weeks Joanna was very happy. This included another visit to the hospice with Joanna and more fights over who would care for her. Every day we would take Joanna in the Jacuzzi and she would get a chance to kick her legs around in the water.
After we came home from the hospice, Joanna was well but then stopped being quite so happy. We wondered if it could be her teeth or the fact that it was very hot, or if it was the SMA taking hold. The next couple of weeks Joanna was generally happy and smiley but had a few off days. On Tuesday 13 July she was very poorly during the day and we were very worried. By this time she had started to have oxygen at times throughout the day and night, as and when she seemed to need it. By Tuesday evening Joanna was much happier. Over the next few days Joanna was quite up and down, our local GP called daily to see Joanna but having never cared for a SMA baby before didn't really know what to expect.
We had a few days booked at the hospice starting on Sunday 18 July and we hoped that Joanna would enjoy this. Friday saw some smiles from Joanna, which made us very happy, Saturday we had a quiet day at home spent in the garden and watching Winnie-the-Pooh on video with Joanna. She would lie on her wedge and watch the video from start to finish.
On Sunday 18th July Joanna was quite happy and we had a good morning. In the afternoon we got ready to go to LBH. Joanna travelled well and was awake for all of the hour and ten-minute journey and we arrived at LBH at about twenty past five. Joanna was due a feed at five-thirty, which she had, and then at six o'clock Joanna started to go off to sleep. I looked at her and her chest was going up and down quickly like it normally did.
Then I turned again and I could hardly see it moving. I picked Joanna up and she died in my arms. I then cuddled Joanna for a long time before we took her to the special room at the hospice where children can go when they have died, which is called Star-Born. We dressed her in some chosen clothes, one of which was a dress worn by Joanna and her sister Rhianna, we all had cuddles with Joanna including Rhianna.
Joanna had died very suddenly but very peacefully in her chosen place, which was the hospice, with Paul, Rhianna and myself with her. We were lucky because we had always said that we didn't want Joanna to die in hospital. We wanted to either be at the children's hospice, or at home.
Joanna was an amazing little girl. She touched so many people's hearts in her short life and she will be in our hearts forever. She was five days short of being nine months old when she died.
We have so many happy memories and lots of photographs and videotape of Joanna and miss her so very much. The support we got from the children's hospice really made a difference to the quality of the time that we had with Joanna. We also really appreciated everything that we got from the JTSMA, in particular the articles that we read in 'Holding Hands', which really helped us to understand what was happening and what was going to happen. Since Joanna died in July, we have attended the Annual Conference which was also a great help, both in the talks given by the various doctors, and especially in talking to other families who had been through the same experiences.
Joanna was happy and we had a good support system set up by our health visitor and GP who arranged a rota to come and see Joanna each day.
For the next couple of weeks Joanna was very happy. This included another visit to the hospice with Joanna and more fights over who would care for her. Every day we would take Joanna in the Jacuzzi and she would get a chance to kick her legs around in the water.
After we came home from the hospice, Joanna was well but then stopped being quite so happy. We wondered if it could be her teeth or the fact that it was very hot, or if it was the SMA taking hold. The next couple of weeks Joanna was generally happy and smiley but had a few off days. On Tuesday 13 July she was very poorly during the day and we were very worried. By this time she had started to have oxygen at times throughout the day and night, as and when she seemed to need it. By Tuesday evening Joanna was much happier. Over the next few days Joanna was quite up and down, our local GP called daily to see Joanna but having never cared for a SMA baby before didn't really know what to expect.
We had a few days booked at the hospice starting on Sunday 18 July and we hoped that Joanna would enjoy this. Friday saw some smiles from Joanna, which made us very happy, Saturday we had a quiet day at home spent in the garden and watching Winnie-the-Pooh on video with Joanna. She would lie on her wedge and watch the video from start to finish.
On Sunday 18th July Joanna was quite happy and we had a good morning. In the afternoon we got ready to go to LBH. Joanna travelled well and was awake for all of the hour and ten-minute journey and we arrived at LBH at about twenty past five. Joanna was due a feed at five-thirty, which she had, and then at six o'clock Joanna started to go off to sleep. I looked at her and her chest was going up and down quickly like it normally did.
Then I turned again and I could hardly see it moving. I picked Joanna up and she died in my arms. I then cuddled Joanna for a long time before we took her to the special room at the hospice where children can go when they have died, which is called Star-Born. We dressed her in some chosen clothes, one of which was a dress worn by Joanna and her sister Rhianna, we all had cuddles with Joanna including Rhianna.
Joanna had died very suddenly but very peacefully in her chosen place, which was the hospice, with Paul, Rhianna and myself with her. We were lucky because we had always said that we didn't want Joanna to die in hospital. We wanted to either be at the children's hospice, or at home.
Joanna was an amazing little girl. She touched so many people's hearts in her short life and she will be in our hearts forever. She was five days short of being nine months old when she died.
We have so many happy memories and lots of photographs and videotape of Joanna and miss her so very much. The support we got from the children's hospice really made a difference to the quality of the time that we had with Joanna. We also really appreciated everything that we got from the JTSMA, in particular the articles that we read in 'Holding Hands', which really helped us to understand what was happening and what was going to happen. Since Joanna died in July, we have attended the Annual Conference which was also a great help, both in the talks given by the various doctors, and especially in talking to other families who had been through the same experiences.
JOANNA ROSE PITCHER-BRIDEL
23 OCT 1998 - 18 JULY 1999
WE WILL ALWAYS LOVE YOU
23 OCT 1998 - 18 JULY 1999
WE WILL ALWAYS LOVE YOU
