PATCHES HEART GROUP

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Sophie's Story

 

 

 

Sophie was born at Eastbourne Hospital on 15th November 2004.  She was full term after a normal pregnancy.  I had a quick delivery of just over an hour.  Sophie was born with a stridor ? noisy breathing and was whisked away as soon as she was born and intubated.  Sophie was then transferred to N.I.C.U. at St Thomas? in London (there wasn?t any room at P.I.C.U. at Guys at the time).

Sophie spent 6 weeks in N.I.C.U.   During this time we found out as well as having serious breathing problems she also had a heart problem.  Sophie had a double aortic arch with a right sided aorta (something her heart surgeon had not seen before).  Sophie had heart surgery for this at 4 weeks old as this was causing some of her breathing problems.

N.I.C.U. was a very calm, quiet unit and Sophie looked huge at 6lb 5oz up against all the tiny prem babies.  Sophie?s time at N.I.C.U. was very up and down medically.  When Sophie was 2 weeks old she had hypocalcaemia and it was very touch and go for 3 days.  Sophie had her heart surgery at Guys and spent a night in P.I.C.U. (that was very frightening as P.I.C.U. was so busy, children coming back from surgery, lots of machines beeping and everyone rallying around).  A baby died the night Sophie was there which was very sad.  It was very different to the calm atmosphere of N.I.C.U.  In P.I.C.U. Sophie was attached to more machines, had more lines put in and looked so poorly after surgery.  After 24 hours she went back to N.I.C.U., the plan was to send her back to our local hospital after extubation and when she was well enough to learn how to feed as she had been on a ventilator all her life.  Sophie and all the other babies and staff were put on erythromycin as a precaution as one of the babies had whooping cough.  Sophie had a reaction and needed intubating again.  Once again she was very poorly and once again we nearly lost her.

During our time on N.I.C.U. the doctors and nurses were wonderful, that first night my husband Simon and I were in total shock.  This had not entered our minds that anything would be wrong with our baby.  We could not believe our beautiful little girl was so critically ill and on a ventilator, it is every parent?s worst nightmare.  The doctors and nurses looking after Sophie were so calm and explained everything they were doing and everything that was going on with the machines. They not only looked after Sophie but they looked after us too.  In N.I.C.U. parents are not allowed to be around at handover so it was explained to us that this was the best time to say goodnight and get some rest, which is what we did, we got into a routine of leaving at 7:30pm and returning at 7:30am the next day.  We stayed at Ronald McDonald House at Guys.

Sophie returned to our local hospital at 6 weeks old with everyone thinking she had been fixed, to try and establish feeding as this was now a big issue.  Sophie spent her 1st Christmas at Eastbourne Hospital and we went home on Boxing Day.  The next few days were a bit of a blur, lovely to be home but frightening as we didn?t have any doctors or nurses at the end of Sophie?scot if it all went wrong.  One of the community nurses phoned from our local hospital to see how her feeding was coming along and if it was getting any better.  Sophie was having 20mls every 3-4 hours so we were called straight in.  Sophie was put straight onto oxygen, her Co2 levels were very high and so she was returned to Guys P.I.C.U.  More tests showed her aorta was causing her more problems, so at 8 weeks old Sophie had more heart surgery, an aortapexy -her aorta was stitched to her chest wall.

Again we thought we were going to lose her, we were back on that rollercoaster nobody wanted to be on.  This time we brought our other 2 children; Ryan then 12 and Abbi then 9 up to Guys with us and they went to school there.  We wanted them to get to know Sophie and for her to spend time with them in case she did die, she needed to have her brother and sister around.  Abbi asked a lot if Sophie was going to die, I had to tell her I didn?t know as she was very sick but the doctors were doing all they could to keep her alive.  I just wanted them to get to know each other and to let Sophie know she was loved so much.  Sophie still had problems after surgery and needed more surgery at 12 weeks; her subclavian artery was causing oesophagealcompression and was removed.  As a result of this Sophie has a very weak pulse in her left arm.

This time we had spent 12 weeks at Guys in and out of P.I.C.U.  It was about the time of Sophie?s second heart operation that the fish test was mentioned and the first time we had heard of 22q.  We were devastated especially when we found out she did have it as it would be a life changing moment for all of us.  Little Sophie who had had 3 heart operations in three months, we knew this would not be the end of her problems.  Sophie still needed oxygen continuously and would do so until two and a half during the day and 3 years old at night.  She only needed a trickle, but without it she would de-saturate very quickly.

We took Sophie home from Guys at four and a half months.  Again Sophie had superb care throughout and we got lots of support from the doctors and nurses.  Without their care Sophie would not be here today and we would not want her to go anywhere else.  We have been very lucky and have 100% confidence in the care that Sophie receives.

We went home in March 2005 and had oxygen installed at home.  Sophie was on a sats monitor, she came home with an ng tube as feeding was still a big issue.  Vomiting was another big issue after nearly every feed, Sophie turning blue, constipation, choking episodes was also a problem.  I felt like some days I was feeding, washing clothes and clearing up vomit all day (that is because I was!).  Sophie also suffers from reflux, is on medication, still vomiting and all the time she was poorly, but, a happy beautiful baby even if she was a bit blue!  She had the most gorgeous smile and we all loved her to bits.  We tried not to move Sophie for about an hour after a feed to help with the vomiting ? it didn?t always help.  Sophie also suffered sensory aversions on foods and everyday items e.g. a hairbrush, cuddly toys, wet hair, fleece blankets, these are just a few and she would vomit violently.  She would do this with a whole range of foods too.  Sophie is a very selective eater, she eats what she thinks is ?safe food?, all rubbish really! Apart from egg, toast, noodles, chicken nuggets, she loves McDonalds, their cheeseburgers are very soft and easy to eat.  Sophie grazes all day with little amounts, but she is eating and that is great.  

Sophie had a gastrostomy at 9 months old as her weight was still an issue, glad to get rid of ng tube but at the time a bit scared of the gastrostomy, but it was a good decision and she still has it (no worries trying to get meds down her!).  We all plodded along trying to lead a semi-normal life.  Sophie was and still is adorable and she has made a rough ride a lot easier to handle.

 Early March 2006 Sophie had bronchilitus and spent a week at our local hospital, recovered and came home. At the end of March when Sophie was about 14 months old she was crawling, but not walking or talking (Sophie has vocal chord palsy), she caught a virus that her Dad and sister had. She was admitted to our local hospital and on Mothers Day in March stoppedbreathing; she was intubated at our local hospital and again returned to the Evelina (Guys). Sophie was critical ? we got to P.I.C.U. and remember thinking she got here, she is safe now and she?ll be fine. Sophie deteriorated further and was put on an oscillator, this didn?t help, her lungs had collapsed ? she needed ecmo, a lung bypass machine. She was transferred to GOSH, that ambulance journey was the worst ever as we had been prepared that she may not make the journey as she was so sick. It took 6 minutes. I remember the ambulance driver saying it was his best time ever. I was so grateful. Sophie went onto ecmo. They had to insert a long canula into her jugular vein, it kinked and they had to do it again. It wasn?t looking good. Sophie spent ten long days on ecmo, we again thought there was a big possibility it would be too much for her.

This time I had her funeral plans in my head. This was a really bad time for us. Sophie?s immunodeficiency was put to the test. It was discovered Sophie had human metopneumovirus ? bird flu from years ago. Thankfully Sophie did recover and on the eleventh day returned toP.I.C.U. at the Evelina and spent the next 5 weeks there recovering. I was, and am still amazed by her and her inner strength. Sophie really wants to be here.

Again we go on with life, hospital visits in London . . . but Sophie was improving. Her milk had been changed to neocate; her stomach had been damaged by the virus. Changing to neocate was a good move as she stopped vomiting as much and started to put on weight. Everything had started to improve for her. Not needing oxygen was a huge step forward, at two and a half Sophie stopped needing it during the day and at three she stopped relying on it at nighttime. Sophie started to take a few steps (she is still a bit wobbly now but it is getting better). Her sensory issues were not such a huge problem; she learned to avoid anything that would make her gag or vomit. Sophie did have chocking episodes but they were not happening nearly as frequently. Chest infections were also less frequent. Things were much better for her apart from her scoliosis which was getting a lot worse. It was decided Sophie needed spinal surgery, her scoliosis was progressing fast and if she didn?t have the operations she would not survive. Sophie would have titanium rods inserted and every 6 months have them lengthened until she reached seven years old when her spine would be fused. To do all of this it was decided Sophie needed a treacheostomy to keep her airway safe as she has vocal chord palsy and treacheobronchiamalacia.

So in June 2008 Sophie had her trachey and in the July she had the rods inserted into her spine. Sophie once again pulled through major surgery; it was very frightening for her. She has had many painful procedures.

 

It was very scary for all of us, we had a family holiday beforehand, and it was Sophie?s holiday! If she didn?t make it, we had the most wonderful memories of a fantastic holiday with her. If she did pull through I would be able to talk to her about it and we took lots of photos which I put into an album to take into hospital with us to help her recovery. I honestly didn?t know if she was strong enough for the spinal surgery but there wasn?t a choice.

It is now January 2009 and Sophie has had her trachey and spinal rods for 6 months. She has had a complete new lease of life, no more stridor, she is stronger, and her sats are the best ever.

As I am writing this she has just had her second stage of spinal surgery, lengthening of the rods. A P.I.C.U. bed was booked for her as she usually needs a lot of care after a general anesthetic but not today ? straight back to the ward where she was eaten toast and watched TV! Once again she has been amazing!!!!!!

Sophie is developmentally delayed, she is a like a 2-3 year old. Her fine motor skills are developing and everything is moving forward for her and she is enjoying life. Sophie loves people chatting to her even if she doesn?t always understand what they are talking about, if they say it with a smile she nods as if she knows what they are talking about. Sometimes it?s very funny to watch as she is nodding and hasn?t got a clue what people are on about and they think she understand to ask her more questions. Sophie signs using simple makaton and can make noises and can make herself understood.

Having a child with Di George Syndrome can be heartbreaking, watching your baby so close to dying, we would not want anyone to go through what we have been through, but Sophie is here, she has beaten all the odds. I don?t know what the future holds for her, here and now, what I want most for her is to enjoy every minute of life. We are very lucky she is here. She has so many strengths; she is beautiful, very enthusiastic and extremely affectionate. She loves attention and is very happy. Sophie is a very visual child, she loves music and the television, Peppa Pig and In the Night Garden are driving me mad! Sophie has a lovely warm personality and is great fun; she loves to please people and always has her wonderful smile beaming from ear to ear.

We have been truly blessed with an extremely special daughter.

Sophie has a great community nurse who is always there for her. Sophie has lots of consultants, surgeons and nurses at the Evelina Children?s Hospital we are so grateful to, as without them we would not have Sophie here with us today.

Sophie was also looked after by Sam the trachey nurse and Rachel the spinal nurse, they have both supported myself and Simon so much. We didn?t take Sophie?s trachey lightly, it was a big step but we know she had to have it. Sam was great and helped us through everything. I am quite a wimp when it comes to medical stuff (I don?t change Sophie?s gastrostomy on my own), Sam was very patient and Sophie took to her trachey so easily that it made it easier for me. You would do anything for your child, especially as we had to be competent in changing the tubes before we were allowed to take Sophie home. No myself and Simon change it weekly and Sophie is comfortable with that. Rachel took care of Sophie?s spinal wound, poor Sophie had a bad reaction to a lot of dressings used, so her poor back was red raw.

One last mention is about Andrew, the P.I.C.U. consultant who has done so much for Sophie and has been involved with her care from 6 weeks old. He did lots of research into her heart surgery. He has done so much for Sophie and has always been involved with her care and treatment and we will always value his opinion. He is truly is Sophie?s hero!

Caroline Tucker
Sophie?s mum

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