Jewel and Sienna's Story

name: Jewel

date entered: 29/05/08

country: Australia

story:

Sienna was born in winter 2002, after a difficult birth.  I held her in my arms and was amazed that she made it through the difficult labour all in one piece.  However the Obstetric Registrar that was on duty at the time, decided to put her on antibiotics, because I was very unwell with a virus.  So they took her some place; I did not know where. 

After some time I decided to try and find her, because I wanted to breastfeed her, hold her close to me and talk to her.  I eventually found her and insisted that they bring her up to my room.  After day two she was struggling to feed and turned purple quite a few times during the day, and then that night the nurse on duty rushed her out of the room, without telling me where she was going.  She came back and told me after several hours of waiting.  The nurse informed me that Sienna had been taken to a special neonatal unit, as she had cleared her airways and helped her to breathe again and now some tests where being done. 

After a few hours I had to go find her and give her a breastfeed.  When I found her the Doctor and Nurse on duty told me they where isolating her because there was something not quite right about her, she looked different and they wanted to test her chromosomes.  I told them I did not care what she looked like, I loved her and I just wanted to feed her and hold her.  So I did, and she seemed much more warm after that.  I had to leave her in the unit and go.  I did this over several days and as I had been insisting they bring her up to my room, they decided to move her to a room with other babies with feeding issues. 

After a week had gone by the Neonatologist visited and told me all the tests where normal, she had all normal chromosomes.  We where able to go home, however he informed me she had a dysmorphic appearance and that meant that she would most likely have developmental delay.  Then as he checked her for discharge, he found she had dysplasia of the hips.  Sienna then needed to have a splint on her hips which did not allow her to move her legs or hips for 3 months.  This was an extremely difficult time for Sienna because she found it difficult to sleep and move around with this splint on.  I was not allowed to bath her to comfort her.  I would hold her lots and sing to her.

The hospital did not support me to breastfeed, however I knew it was the best for her.  It would take a long time to feed her. 

Then at about 5 weeks of age, I noticed she did not look at me or focus her eyes on me or anything really.  I followed this up with the ophthalmologist at the hospital, which took considerable amount of time and then finally this person did not know what was wrong; she said we just had to wait and see.  I insisted there was something that perhaps could be done, and then they suggested a Brain Stem test.  This resulted in a finding of cortical vision loss.  When we saw the Ophthalmologist next, we were told Sienna was blind.  Of course I did not believe them, I knew Sienna did see some things and so I learnt to help Sienna.  I knew that she loved looking at moving objects and toys that made noises etc.  So we spent lots of time trying to improve her vision.  Sienna did not enjoy going to the hospital, because the Doctors would not talk to her, like she was there, and so she quickly learnt to switch off from their comments.

I noticed for some time that Sienna would get upset at loud noises and her little face would be expressionless at times.  I asked the hospital doctors about this, and they did not believe me.  So I found a path through my GP and I insisted on getting a referral to the Hearing Assessment centre with Child and Youth Health.  After this appointment it was confirmed that Sienna had severe bilateral hearing loss.  We were told grommets would help to improve her hearing loss.  So then it was a journey to find an Ear, nose and throat Surgeon who would operate.  We had a couple of referrals and when they meet Sienna they just said it would not help her and where quite arrogant about their position. 

Then we went back to our GP and asked him to phone around for us, we would not leave the room until he did.  He found a Senior ENT surgeon, who would see us, he was fantastic and talked to Sienna and Sienna laughed as he talked to her.  I was able to see that he had a lot of compassion and Sienna liked him.  He did the operation and it did improve her hearing to a Moderate permanent bilateral hearing loss.   By the time Sienna turned 11 months of age, she had hearing aids to hear. The operation for inserting the grommets was done quite a few times because Sienna's body wanted to expel the grommets.  So it was good that the Surgeon was so helpful.  We had to do these operations at a private hospital because there was an 18 month waiting list at the public hospital and they did not see Sienna as a priority.

There where many challenges for Sienna and I and of course her big sister, who cared immensely about her little sister.  One of the biggest challenges was when Sienna got very ill with pneumonia and the nurses insisted on me not breastfeeding because it was too much work for Sienna.  They put a nasogastric gastric tube into Sienna.  This was not good and Sienna got most upset and stopped eating completely.  Then at about 9 months of age she had been admitted to hospital with more cases of pneumonia the doctors informed me that Sienna needed to have a gastrostomy so that she would be able to continue to grow, as her weight was decreasing and she was not growing now for some time.  The doctors also informed me they suspected Sienna was aspirating.  Due to this consideration and as Sienna did not like the nasogastric tube in and it was becoming more difficult to breastfeed her.  At about 12 months of age Sienna had a gastrostomy in. 

Sienna began to grow and got well and about 20 months of age she refused to breastfeed.  I continued to bottle-feed her, however not long after this she got pneumonia again and then stopped eating completely, so all her nutrition was via her gastrostomy.  At this stage the paediatrician made a referral to palliative care for Sienna.  However I knew that Sienna had a very determined spirit and we found they limited Sienna accessing therapy etc.  I was told by the pediatrician that Sienna would not be able to walk, talk, eat or drink etc again, however he did not know why, except to say it is due to some type of neurological disorder.  Sienna had previously had a CT scan of her brain and it showed atrophy of corpus callosum (it had wasted away).

There where so many more challenges now, as Sienna had been referred to IDSC Early Intervention Team, however we did not receive very much assistance from them.  So I had to appeal to the Minister for Disability to change services to Novita Children's Services.  This was quite a process.  Novita eventually accepted her as a client when she was about 2 1/2 years old.  It was difficult to get assistance from the Commonwealth Government before then because Sienna did not have a clear diagnosis, so that required appealing to Centrelink during that time as well.  It was not until Sienna was referred to the Palliative Care service of the hospital that I was able to receive the Carer Payment.

Sienna really enjoyed going to child care in the morning, and now with the gastrostomy she was not able to be given her nutrition, until the staff were credentialed.  So I had to give up my part time job and care for Sienna, this was when Sienna was about 13 months of age.  I wrote many letters to the Government for them to assist in credentialing.  Then the funding came through and so the staff at the child care, were able to give Sienna her nutrition. 

As Sienna was not able to speak so that others understood her, I developed a picture card system, this was textured, and so when Sienna wanted to do something she was able to look to the picture she wanted and then would be able to do this.  This was very effective; however many other people would not use this method of communication, such as Doctors, Nurses and child care staff.  So I taught Sienna some basic signs which she learnt quite quickly.  However the other people, such as doctors and child care staff, would often not see the signs because they were too busy and they did not give Sienna time to respond.  Sienna always likes people to talk to her and many people would stop when they did not get immediate response.  Sienna would nod her head up and down to say 'yes, please keep talking to me'.  So I became one of Sienna's main forms of communication, we would sing, talk, read stories etc.  We found this to be most helpful, especially when having to visit the paediatric emergency department, the staff would not listen to us and they would do unnecessary tests and Sienna would get extremely distressed, so I would sing her songs to comfort her and then the staff would see how Sienna listened to me and responded and then they realized Sienna did understand.

When Sienna was two years old, she wanted to go up with her peers to toddlers, but we were told this was not possible, because Sienna was a baby and needed to stay in the baby section.  Sienna wanted to go up to the next level with her friends and play with new toys and learn other things now.  So I persisted in many ways, as she would catch many viruses from being in the baby room.  So I insisted her health would be better for her to move up to kindy by the age of three. 

So when Sienna turned three, they transitioned her up.  This was very interesting because the staff had not seen a little girl like Sienna.  I explained many things to help them to understand Sienna.  Now Sienna was moving around the room on her bottom and using her hearing and vision to get around the room.  It took a few months for Sienna to get used to the kindy because it was quite noisy and this would often scare her and the other children would not understand that they needed to come up close and talk to her so she would know they were there.

Now as Sienna is 5, I have been asking the Department of Education to transition her to the local primary school, where her sister has been attending for the past 5 years.  This is proving to be difficult; they will not transition her until term 4.  The Department of Education has recommended that Sienna goes to a special school for children with complex needs.  However after Sienna visited these environments, she told me through using signs and picture cards she wanted to go to school with her friends that she knows from her kindy.  Sienna has been walking with support and enjoys walking alongside her friends and hearing them talk and sing around her. 

In the past years, Sienna has been diagnosed with severe asthma (at 2 years of age, managed with medication), central sleep apnea (at 3 1/2 years of age, after waiting a year on the sleep study waiting list, managed with oxygen when asleep, we where told Sienna most likely had this from birth), reflux (diagnosed at 4 years of age, however when they did the test at the hospital the probe was inserted into her lung instead of her stomach and Sienna got pneumonia, this is managed with medication), chronic constipation (diagnosed at 3 after been admitted to hospital with pneumonia and during the night coughed so much she had a bowel prolapse, because the doctors didn't believe Sienna had a history of constipation, this has been managed through surgery and medication), carnitine deficiency metabolic disorder (diagnosed at 4 1/2 years of age, after a blood test showed she had 1% carnitine in her body, this managed with medication), myopia (diagnosed at 3 years of age and now wears glasses to help bring objects into view), foveal hypoplasia (diagnosed at 1 year of age, after looking at her eyes under anesthesia), optic nerve hypoplasia (diagnosed at 2 years of age after looking into her eyes under anesthesia), epilepsy (diagnosed at 3 years of age and is managed with medication), moderate bilateral hearing loss (has bilateral hearing aids), hypotonia, autism spectrum disorder (diagnosed at 3 1/2years of age by Autism SA) ,( bronchomalacia, tracheomalacia, chronic lower lung collapse (managed with respiratory physio everyday); scoliosis of the spine.  Sienna has been admitted to hospital over 33 times in the last 4 years.  We have had assistance from the therapists at Novita and have appreciated all of this.  This has been in the form of a therapy visit once a fortnight, eg Physio twice a term, Speech Therapist twice a term and Occupational Therapist twice a term.  We have also been able to access hydrotherapy group and the Novita Toy and Resource centre, which have assisted my daughter learn and develop.

Sienna loves music and is motivated by others around her and enjoys story time.  After the last Negotiated Education Plan meeting with Department of Education, we have a feeling it is going to be difficult to attend the local primary school, because the principal does not have an awareness of children with disabilities.  The Principal did not come up and say 'Hello' to Sienna; it was though she was not there.  He wanted to know what a gastrostomy is, and the nurse at the NEP had to explain this to him.  However I am going to persist that she is given the opportunity to be a child and attend the local school.  I will have to work with them to assist their understanding of Sienna, as she will love going there and sitting beside the other children and learning from them. I had to write to the Minister for Education to get a space for a disabled car park permit, as there were none and the Principal told me it would draw attention to people with disabilities and he did not want to do that. 

Sienna also loves to go out to the local park; however there will eventually be no equipment she can play on, because as she gets bigger the swings will not support her enough.  So I have written to the local council for them to make improvements to the Council parks, however this will be a hard task, because we have been told, there are not very many disabled children who use the parks.  I explained to them that when the parks have disability access, and families are informed of this, more families who have a child with a disability will access the parks. 

There is also a need for more car parking facilities for those with disabilities.  Sienna takes considerable amount of time to get out of the car and most car parking space is very limited.  The doctor at the hospital signed off on a disabled car parking permit, however most times when we park in a disabled car parking space, people ask us if we have a disabled car parking permit.  It is especially difficult to access the hospital because there are only two disabled car parking spaces outside the hospital and when it is cold and wet it is difficult to find a car park to get Sienna out of the car safely.  There are also long waiting lists for equipment, as we have had to write many times to the Government to access equipment such as a standing frame, which helped her to learn to stand.  After waiting about 18 months Sienna now has a wheelchair for mobility and a walking frame to assist her develop her walking skills.  These pieces of equipment were accessed through advocating on my behalf with various charities, agencies and other sponsors who have been helpful.  Now Sienna is at school this year and can get around at school and also has a communication device, so that the other children and teachers can communicate more effectively with her.

Last year Sienna received a diagnosis of hypotonic cerebral palsy.  Sienna is loving school and is at our local mainstream public school, with her big sister.  Sienna only attends until 12 noon.  There has been so many meetings to achieve this outcome, it has been hard work, but worth every drop of perspiration.

There is so much more to our story, however it would require a book to be written to capture it all. The above is a small glimpse.  Stay tuned for a book about Sienna's journey.

__________