Maddison's Story

Maddison was born a healthy 7lb 13oz on the 6.8.08,she was perfect.
When the midwives checked her over they noticed that maddison had positional telapese(club foot)but reassured us that a lot of baby's are born with this and that it would correct its self with a few visits to the physio.
We took maddison home the next day,she fed well,slept well, perfect little baby,what i did notice is that maddison had the littlest cry,i have 3 older children so i knew something wasn't quite right.i spoke to my health visitor but she wasn't concerned and said all children are different.
At this  point maddison was 6 weeks old and was on her second visit to the physio for her feet,i mentioned to the physio that the movement in her feet had almost stoped and she agreed,she rang round the hospital to try and get a ped doctor to come a review maddison,but none of them would.She sent us home and said we would hear from her when she had arranged for a ped doctor to see her.
We went home quite puzzled and scared,but maddison seemed to be doing fine and was thriving, so i waited to hear from the physio.
A week later a letter came though the post, saying a neonatal consultant would see her,i was confused as Madison wasn't born early,so i rang Maddie's  physio and she said that he was the children's doctor that would see her.
i took maddison to see the consultant and he wasn't worried at all about her,he said she looked perfect,but he said he would review again to make sure i had no other concerns.
between the time from the 1st appointment to the next one,maddison feet and toes stoped moving completely, plus she wouldn't bare any weight on her legs.i told the doctor when we saw him again, but again he said she is just a bit slower then my other children,and he discharged her.
When maddison was about 4 months old she had what seemed to be a really bad cold,she wouldn't sleep or feed and was really struggling to breath,i took her to the GP and they sent her to the hospital.
when we got to the hospital they said she had bronculitis and needed a bit of oxygen and a ng tube.after a few days she picked up and they let her go home.
she was doing ok in till she was 5 and half months old,this was January 2009.Then she started with the same symptoms as before poor feeding,struggling to breath.I took her back to GP and again sent her straight back in to hospital,this time they sent a note saying xray on arrival suspected phmonia.when we got there the doctors refused to give her a xray and said its just broncitis again,they put her on a ward and ng feed her and oxygen again.After a week of being in hospital maddison was getting no better and i was starting to get mad,i asked for a different doctor to review her.as soon as he saw her he sent for a xray straight away,and in fact she did have phnomonia.
she had 7 days of antibiotics and they sent her home.
When we took her home she was still very weak and still struggling to breath.we was at home for 3 weeks when she started getting ill again.
This was 16th feb 2009,back in accident and emergency.one nurse came into to asses her,i could tell by his face something was wrong.
he went to get a different doctor to look at her,i asked what was wrong and he said her pattern of breathing was the opposite way to a normal persons breathing,meaning when she breaths in her diaphragm was going to wrong way so she wasn't inflating her lungs right.
maddison was put on a ward again,this time she looked really really poorly.
She had a really bad night that night and in the morning she looked terrible,you could see all her ribs with effort of breathing.
the doctors on the ward asked the main doctors on intensive care to come and see her,they did a blood gas and said it was high,they took my baby into intensive care.
There they did a chest xray,they told us her diaphragm was high on the right side,and it was stopping her lung open,and that's why she cant breath.
They put her on a ventilator to try and re open her lung,after a few days there was no change,so they chose to operate on her diaphragm to tighten it and pull it down.they was till telling us that this is probably congenital and after the op hopefully she will make a full recovery.
After a few hours of surgery her lung had re opened and they she came off the vent,things were looking up.
Maddison went back to a normall ward the ext day,she was still on oxygen and was still needed to be NG fed.
One doctor came to see us over the next few days asking lots of questions,she was a neurologist.she was mad with the other doctors for not referring her before.she was asking things like were me  and Maddsions dad related,what was maddison cry and cough like,she was looking at her feet and her reflexes.The doctor asked if she could do a few test and we agreed.
maddison stayed the same for the next 8 weeks,still in hospital,still on oxygen and still needing help feeding.
i started to notice that she was starting to gag when they were NG feeding her,i voiced my concerns,but like normal they took no notice.
In till when it came to feeding her she stated gagging and going blue,they called the intensive care doctors,they came and bagged her round to picu and put her on a vent again,a x ray shown that her NG tube was in fact in the wrong place,and she had aspirated into her lungs.
The neurologist started doing loads more test e.g never conduction studies,muscle biopsy's,lumbar punchers,blood test.
Maddison went back on to the ward,this time they kept her on high dependency unit.After a few weeks maddison took ill again,influenza this time,she was ventilated for 2 weeks.but again she pulled though,my strong little fighter.
back on hdu some of the results started to peace together,her nerve conduction shown problems as did her muscle biopsy.
her neurologist said her muscle biopsy looked like she had something called SMA1,then i had never heard of it.the blood came back negative for sma1.
Then the mention of SMARD1 started to come around,every one kept telling me its not going to be SMARD1 shes to strong,even other neuro doctors didn't think it could be smard1.
Then on may the 20th 2009 the day i will never forget,Dr chow came to us on HDU and took us to a side room and gave us the news we were dreading,SMARD1 positive,it felt like my heart was ripped out, that my head was spinning a million miles a hour.
I ran out the room and just grabbed my baby and held her tight,i was in total shock and despair.
the next few days was a blur,i stayed at the hospital with her the whole time.
A week after Maddisons diagnoses at 3am in the morning the nurse that was looking after maddison rang me in my room at the parents unit in the hospital,maddison had taken ill again and they was taking her back into intensive care.
walking up the corridor seemed like a endless walk,not knowing what she was going to be like when i got there.
Even though maddison had been in picu 3 times before,but this time it was different,this time i knew she might not get better.
After a few days they wanted to try her off the ventilator,the took the tube out at 7pm by 1.30am her blood gases started to go high so they called the on call intensive care doctors.
They came in and put the tube back down,they sat us down and gave us some horrible choices,do we let her live and put a trachy in and ventilate her or let her go the natural way.For me it wasn't natural for a 10 month old baby to die.so for us there was no choice,maddison was not going no were.
the following Monday maddison went down for trachyostomy,plus she had a G tube to as they told me she wouldn't swallow again.
From that day in June 2009 she thrived,we had to learn all her cares e.g cough assist,chest physio,trachy changes,vent training ect.
When Maddison was 1 year old,she started to sit and started to try taster foods.
On the 19th December,a few days before Christmas we took maddison home,almost 11 months after we took her in to hospital.
Weve been home 18 months now and maddison as done fantastic,she has learnt to roll,suffle around the floor,eats all foods,talks and the biggest thing is she as had time OFF her ventilator for over a hour a day.  she is so happy.
Maddison starts main stream nursery in september,she is so clever the teachers say she will top of the class.
We are so proud of our little solider.
Maddison as 24 hour care.

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