Natalie's Raise awareness for sturge weber syndrome
Natalie Dalton is raising money for Sturge Weber UK
Participants: Raise awareness for sturge weber syndrome
“Raise awareness for sturge weber syndrome”
on 19 September 2016
Story
Thanks for taking the time to visit my JustGiving page.
On 16/03/2016 I gave birth to our beautiful daughter Chloe Rose weighing 9lb 3oz after a very long exhausting labour. Throughout my pregnancy baby Chloe was weighing bigger than normal to which I was checked for gestational diabetes which came back clear. I was told I had polyhydromnios which is excess water .I was induced on morning of 16/3/16 due to this and the size of Chloe and at 6:22pm Chloe was born. Chloe was taken to neonatal for a tube to be inserted to clear her lungs to make sure there was no extra fluid. Whilst waiting to go up onto ward a team from neonatal came down as Chloe had a large red mark covering her face and neck. I was informed this could just be a birth mark and may fade gradually. The next morning we was visited by a pediatrician and he stated Chloe had port wine stain and that this could cause many problems epilepsy, glaucoma, weakness down one side of her body, delayed development etc and that she would eventually need laser surgery to fade the stain on her face. Chloe seen an opthomologist who checked her eyes and said Chloe had a hearmogioma on her right retina and could effect her eye sight later on in life. The first 3-4 months of Chloe's life was amazing she is a little bundle of joy and never cried unless she was hungry. On 10/7/16 Chloe was not quite herself she got sick 3 times on the morning and I noticed her breathing was not quite right. I took her to the nearest walk in centre and from here was blue lighted in an ambulance to heartlands hospital, my heart sank. I was told this baby is not well. We was greeted by a team of about 10 doctors, nurses etc. Whilst in high dependency Chloe had a couple of seizures and apnea moments between 10-20 a day. This continued for about 4 days until Chloe had an EEG and this confirmed Chloe had abnormal electric activity. Chloe was diagnosed with epilepsy and started her medication straight away. After 2 days on medication we was sent home and Chloe continued to improve and got her strength up. This didn't last long and on 3/8/16 we was admitted back to hospital with more seizures. This was due to the amount of weight she had put on and the dose of medication needed to be increased. Later on 3/8/16 we was sent home and luckily to date she has been great. Chloe is our world and such a happy little character. Chloe has sturge weber syndrome and will have this for the rest of her life. Her epilepsy is well controlled with her medication. Chloe's epilepsy seems to be coming from the right side of her brain and luckily this can be helped with surgery if needed as she gets older. Chloe will need extra help and many appointments with neuro surgeons, opthomologists, skin specialists etc as she grows older but is doing great and is 6 months old. She has an amazing bigger sister Ella who loves her dearly. We try our best to make sure Chloe is well and never in any pain.
On 16/03/2016 I gave birth to our beautiful daughter Chloe Rose weighing 9lb 3oz after a very long exhausting labour. Throughout my pregnancy baby Chloe was weighing bigger than normal to which I was checked for gestational diabetes which came back clear. I was told I had polyhydromnios which is excess water .I was induced on morning of 16/3/16 due to this and the size of Chloe and at 6:22pm Chloe was born. Chloe was taken to neonatal for a tube to be inserted to clear her lungs to make sure there was no extra fluid. Whilst waiting to go up onto ward a team from neonatal came down as Chloe had a large red mark covering her face and neck. I was informed this could just be a birth mark and may fade gradually. The next morning we was visited by a pediatrician and he stated Chloe had port wine stain and that this could cause many problems epilepsy, glaucoma, weakness down one side of her body, delayed development etc and that she would eventually need laser surgery to fade the stain on her face. Chloe seen an opthomologist who checked her eyes and said Chloe had a hearmogioma on her right retina and could effect her eye sight later on in life. The first 3-4 months of Chloe's life was amazing she is a little bundle of joy and never cried unless she was hungry. On 10/7/16 Chloe was not quite herself she got sick 3 times on the morning and I noticed her breathing was not quite right. I took her to the nearest walk in centre and from here was blue lighted in an ambulance to heartlands hospital, my heart sank. I was told this baby is not well. We was greeted by a team of about 10 doctors, nurses etc. Whilst in high dependency Chloe had a couple of seizures and apnea moments between 10-20 a day. This continued for about 4 days until Chloe had an EEG and this confirmed Chloe had abnormal electric activity. Chloe was diagnosed with epilepsy and started her medication straight away. After 2 days on medication we was sent home and Chloe continued to improve and got her strength up. This didn't last long and on 3/8/16 we was admitted back to hospital with more seizures. This was due to the amount of weight she had put on and the dose of medication needed to be increased. Later on 3/8/16 we was sent home and luckily to date she has been great. Chloe is our world and such a happy little character. Chloe has sturge weber syndrome and will have this for the rest of her life. Her epilepsy is well controlled with her medication. Chloe's epilepsy seems to be coming from the right side of her brain and luckily this can be helped with surgery if needed as she gets older. Chloe will need extra help and many appointments with neuro surgeons, opthomologists, skin specialists etc as she grows older but is doing great and is 6 months old. She has an amazing bigger sister Ella who loves her dearly. We try our best to make sure Chloe is well and never in any pain.