WARRIOR MUM - LESLEY CHAN'S JOURNEY

Charge syndrome, Deafness, Sign Language and Midwifery.


NHS Change Day - A Mother's Pledge from Larchmont Films on Vimeo.


Please watch this video. 

Thanks to Lesley, nurses at Manchester Royal Childrens Hospital pledge to learn six signs a week.



This week I am delighted to feature warrior mum, Lesley Chan, from Manchester. Lesley was a dental nurse but after the traumatic events of her baby's birth she decided to train as a midwife. During her university course, Lesley spent many hours revising for exams beside her daughter, Amélie's, hospital bed. 
Today, Lesley is there when the babies are born and understands the array of emotions a mother feels after giving birth to an infant that is desperately clinging on to life. She's an angel on the wards and a fantastic mother to four lovely girls. Lesley says she couldn't have achieved any of this if it wasn't for the love and support of her 'hands-on' husband Darren.
Here is Lesley's story.

"Amélie has had 22 trips to theatres, several surgeries, two Nissan fundoplication for reflux disease, first one failed, many aspirations and this has made her lungs chronic and she has bronchiectasis. Amélie remains oxygen dependent, tracheostomy, gastrostomy doesn’t eat food but loves to taste food. Amélie has no hearing nerves so she will never hear sounds or speak, she is partially sighted and requires 24/7 nursing care."

                                        

The Midwives BBC 2, St Marys Manchester my lovely colleagues and I. (That's me with the file.)

I was born in 1968 in Salford, Manchester and by the tender age of 18 months old I had a heart operation myself, so me and my girl have matching scars identical yet 38 years apart.  Family life was like most those days two parents both hard working,  mass on Sundays and back for benediction with Ganny Barton at 4pm. Caravan holidays to the coast line and the school holidays were always spent all day everyday outside playing cricket and football with my two brothers.

At the tender age of 15 I met my one and only true love and now husband Darren he was aged 19, in our local rugby club, where my brothers and cousin also played rugby. My father was poorly with cancer and my mum said Darren was ‘too old’ for me. Of course when your ma tells you this like most females I became a little defiant. 

I left school and started work immediately as a dental nurse, qualified at the Manchester Dental Hospital and then stayed with this profession until Amélie’s birth. I was also a Special Constable with the Greater Manchester Police force for 18 months as I thought I wanted to be a police officer. 

When I was age 17 my father lost his fight with cancer and died aged 42, and this would be my first devastating event in my life. Darren and I moved in together the following year 1986 and have been together ever since. 

We were married on the island of Jamaica in 1991

We are the Chan family - Mum, Dad and four lovely daughters

Gabrielle, is 19 and following Mum's footsteps into nursing. She is a student Paediatric nurse at Edge Hill University

Olivia, is 17 and our most chilled out child. She's played for Manchester City Ladies Football Club 8 years now and captained them to win the treble. She adores football and wants to be a PE teacher. Olivia is currently in her 2nd year at college and she also works behind the bar at the rugby club where Darren and I met 30 years ago :)

Fleur is 10 and is adorable. She has been raised in hospital. When Amélie was born Fleur was just 14 months old and the two are inseparable. She is a full time young carer in her own right. She tube feeds Amélie and suctions her nose, helps with all her cares and is such a caring girl as a result.

Tell us about when Amélie was born?
The birth of our fourth child would be our last child. I was 37 and Darren was 41. Although we were excited, I was also feeling exhausted towards the end of pregnancy. There had been a number of reduced baby movements that I had never experienced with our three other children and excessive amniotic fluid (polyhydramnios). Following a diabetes test result of 7.9mmol (borderline in 2004) I was scanned and reassured by the obstetric team that my baby was ‘fine’ and labelled ‘gestational diabetic’…I have since become wary of the word ‘fine’ !!

Amélie Mia entered the world a term baby 39 weeks gestation by elective caesarean section (due to previous caesarean section) on Monday 10^th January 2005…we eagerly awaited some healthy sounds of crying…they did not really arrive, just a very feeble attempt at one. The Midwife provided some facial oxygen and stimulation in what seemed like an eternity. The Midwife very promptly dressed Amélie and encouraged a first feed regardless of having obvious facial palsy, subtle dysmorphia, no ear lobe or pinna, low set ears, epicanthus fold and abnormal eyes. Since I have trained and become a midwife this is the one issue I do have in all of Amélie’s care to date…a serious lack of observational skills of the newborn.

Amélie was fed and deteriorated rapidly from this feed as it came back out of her right nostril. Darren immediately alerted the midwife and asked if it was normal. It became quickly evident that this feed had deteriorated Amélie into respiratory distress and she rushed to the local special care unit. I was reassured all was ‘fine’ there’s that word again!!  I was also reassured this is normal for a baby born by caesarean section and informed promptly Amélie had ‘wet lung’ and things would improve with antibiotics (correct term; transient tachypnoea of the newborn).

During the immediate days of Amélie’s birth I kept complaining of chest pain and having been reviewed several times, doctors  reassured me all is ‘fine’ and I was suffering with anxiety as my baby was poorly…I later collapsed on the special care unit, slid to the floor. My husband described blue lips sweaty and whiter than white. All is not’ fine’ thank god the nurse summoned help, she said she was concerned about me and a VQ scan was requested.

Whilst I was being assessed, Amélie was now suffering seizures and heart murmurs were detected and a rapid transfer to a regional unit to be ventilated took place. I was informed I could not transfer with her as I had to wait for my results and treatment to ensure my bloods were stabilised…NEVER separate mums and babies is my only feelings here as this was to be the worst hours of my life …

The following evening with my husband at the bedside of Amélie who is now fighting for her life, my three daughters living at my parents’ house,  I am alone and being diagnosed with a pulmonary embolism (blood clot on my lung). The medics rushed in following these results to weigh me, try and get a pair of stockings on my legs and provide me with 10mg Warfarin and fragmin injections…I prefer to call this ‘after the event care’ !! Repeatedly distressed by calls made to my heartbroken hubby, I asked to be transferred,  again. I was told there were no beds at the hospital Amélie was at…so there was only one thing for this ‘self discharge’. Reckless as this sounds I left in my pj’s with a yellow booklet for anti-coagulation clinic and lots of injections and Warfarin- my new best friend.

Once I had seen Amélie and realised things are now very bad, I went home to pack a bag of knicker’s, toothbrush etc knowing I was not leaving my girl again. This would later become a standing joke with friends and family as the ‘Amélie knicker’s’ and these are always packed and always in my bag for any eventuality. … Unfortunately the brain kicked in whilst packing and I quickly googled pulmonary embolism and realised signing myself out of hospital was not the wisest move I have ever made and I rapidly attempted to re-admit myself at the hospital after reading the words ‘pulmonary embolism is the leading cause of maternal death, 2005’  A&E very sympathetic and readmitted me to a geriatric ward, not a maternity ward, elderly ladies wandering in winceyette nighties and shouting at me or crying, so I too cried. I then made an SOS call to my husband in tears who was now also in tears. The neonatal nurse caring for Amélie stepped up to the mark, she arranged a bed at the same hospital as Amélie on the postnatal maternity ward. I promptly left in a taxi with my knickers, toothbrush, and warfarin all in tow and feeling somewhat fragile, if I remember correctly!

Vegetative? Where?

And so the long NICU journey had begun, as we welcomed the expert advice from Dr Lydia Bowden our new Consultant Neonatologist, the most wonderful medical doctor we have trusted for 8 years now.  Unfortunately, there are always negatives ‘she will be in a vegetative state’ one senior doctor told us and asked if we would like to consider withdrawing ventilation.   

                                                                              

Junior medics repeatedly asked endless questions of; 'are you married to your cousin?' Which I have to say began to irritate me. Other questions followed every shift handover for weeks such as, ‘have you been ill or exposed to anything in your pregnancy? Do you smoke? Do you drink alcohol? I was a sensible pregnant mother and of course these did not apply to me, but nonetheless the culture of blaming myself for all Amélie's surgeries and unknown condition began to take their toll. 

How did you finally get a diagnosis?

As we could not sleep on the NICU unit, every night arriving home late I would enter the google search tool, I would search syndromes, google images, all  I had to go on was Amélie's abnormally shaped ear, heart defects and optic nerve colobomas (partially sighted) that had been diagnosed. I asked her team if she had di-george syndrome and also VCF was in the running. Lydia debriefed us that sometimes children are left without a diagnosis and encouraged me to stop searching as they were doing all they could to find the missing puzzles to the jigsaw. My girl was a jigsaw. This didn’t offend me but I searched more intensely. Not finding a reason  became my biggest fear. The not knowing and endless culture of blame I placed upon myself.

At three weeks of age and hundreds of syndromes later and all printed out on the conservatory floor in piles of ‘no’ ‘maybe’ or ‘probable’ I woke Darren up (not the first time I had done this) at 04.00am with ‘CHARGE syndrome’ pictures of the ears and of children described like Amélie. Darren replied ‘I had to stop doing this’ we were also leaving at 06:00 am for Alder Hey Children's Hospital for surgery, so dismissive of Darren’s thoughts and words I put all the CHARGE syndrome info in my ‘knickers’ bag.

Amélie left in an ambulance to Alder Hey but there were no intensive care beds in the hospital when she arrived. Consequently, we settled out of desperation of being cancelled again, for a couple of hours in a recovery bay post theatres. Followed by an ambulance back the same day of surgery to her local hospital…possibly the worst ever car journey for Darren and I as we had to travel separately and when she was delayed arriving back, I entered what I would describe as one of the very many of my melt downs !!

On arrival back to our unit post heart surgery, I asked her team if she had CHARGE syndrome. Staff were dismissive and said I should speak to Dr Bowden on Monday morning. It seemed like a long wait but over that weekend, the more I searched and made internet contact with families abroad the more I knew she had CHARGE. When I spoke with Dr Bowden on the Monday she agreed to have the geneticist come see us and a few days later she agreed she did have some subtle features of CHARGE syndrome, I had by now read further and told her a woman in the Netherlands had found the gene CHD7 on chromosome 8 and could we send Amélie's blood to this team. (UK did not test for charge in 2005). Our geneticist equally as empathetic as Lydia agreed and also told me Amélie did not have di-george or VCF. Bloods were sent to the Netherlands and this would be a very long 6 months to await their analysis, not sure if this was due to back-log from newly diagnosed syndrome finding or another reason.

In the meantime I put information about Charge Syndrome.org at Amélie’s incubator. I attempted to explain to NICU nurses how children with the condition couldn’t bear the light (full strip light above her incubator) and with multi-sensory impairment featuring high on the syndrome spectrum could sudden movements to do her cares be the reason she became distressed. This went down like a lead balloon and I was now obviously sensing the parent labelled ‘who does she think she is’ and life became very difficult for me from here onwards on the NICU unit. I overheard negative staff comments about me and it saddened me they should feel this way …in my humble opinion I was a devastated mummy needing to know why my term baby had been born so sick, especially with three healthy girls at home. My desire was not to irritate staff but to try and understand my girl’s exceptional needs. I have to emphasise that at no point did our Consultant Dr Lydia Bowman ever make either Darren or I feel this way.

In the weeks that followed Amélie should have been recovering well following her heart surgery, but she deteriorated further and a new heart scan revealed Cardiomyopathy, that was not present on the echo prior to surgery. The doctor asked me if I was a diabetic (which by now I was not) but this plummeted me further into the ‘it’s all my fault mode again’.

Nissan fundoplication April 2005 and easy to gastrostomy feed 12 hours a day now.  

At 6 months of age our geneticist confirmed CHARGE syndrome. At long last we could truly learn how best to help our girl, ensure care and education meets her individualised needs and advocate for her effectively.  

What's it like being a midwife and how many babies do you think you've helped bring into this world?   
Being a midwife is incredibly challenging, especially with so many small units closing, increased birth rates and a national shortage of midwives.
People's expectations are much higher than years ago, even so, I feel we have an NHS to be proud of.... although its wearing me out with long shifts!! There are some very special families I meet and never forget; amazing outcomes and some in grief, I feel I have a lot to offer the outcomes that are sad, maybe that’s my experience of Amélie's birth, not having any special happy memories. Mostly I prefer not to remember the early years. I've delivered lots of babies as I work on the birth centre but I've no idea how many, possibly a couple of hundred by now.

You've obviously been a great advocate over the years and one of the biggest fights was for Amélie's right to a decent education. Sadly for most parents transition from one stage of specialised schooling to the next is no longer an automatic right of passage. How have you navigated your way around the education system and is it meeting Amélie's needs?

Amélie was placed in the early year’s education setting at a local education school for special needs children.

Initially we were told how she would struggle to learn, multi-sensory impaired and ‘clearly neurologically abnormal’ according to the neurologist, Darren and I happily agreed we didn’t need to see her again for input…too negative !!

As we began to realise Amélie was trying to learn we became in contact with a teacher of the deaf but Amélie was only provided with one hour per week at school . Our TOD said Amélie had potential with the useful vision she had to be able to learn sign language. The special needs teachers disagreed and said that ‘sign-a-long’ was a sufficient language to learn. Sign-a-long supports hearing children and Amélie has no hearing nerves.  Darren asked at one parents evening if they felt she would improve surrounded by deaf peers, they disagreed and said ‘’she was hardly the brightest child in the class’’ Darren replied ‘’can the other children hear’’ of course they could and this fleeting statement set my mind a blaze.

I contacted the nearest school for the DEAF but they declined saying Amélie was too medicalised at this age,  but they would re-visit her health. Our bigger challenge was the LEA who had a psychologist review Amélie and said ‘no’ to any such move out of the authority, she felt the school, was meeting ALL Amélie's needs. Of course I refuted this statement, challenged it as a basic human right to an education in a language a deaf child could benefit from.

We never gave up with this and 2 years on the school revisited Amélie and agreed they could accept her but the LEA declined the move. So I went on my ‘momonamission’ mode and emailed wrote and corresponded to anyone who would listen reply and evaluate and we eventually won our appeal.

What saddens me most is what about those families where parents don’t have that fight left in them, what happens to children where the LEA says no and this is not challenged?!!

Amélie has excellent sign language and communicates all her needs as a result of her wonderful school for the DEAF Thomasson Memorial in Bolton. Our next challenged will be age 11 and where she will go from there?…More challenges ahead…sigh…why must it be like this!!!  

Do you have any respite support?

We frequent Derian House Hospice when we can. My girls have grown up sleeping in the hospice, playing with disabled kids as we never leave Amélie alone because she can't speak or communicate unless the other person has BSL (British Sign Language) and sadly, no-one does use sign language, so leaving her is not and never will be an option.

So the girls stay with Amélie at the hospice so you and Dad can have a break? Aw, that's nice...                                                       

Yes. I have to say having been left with my parents a lot and to their own devices as we slept in hospital mostly for the first three years of Amélie's life, we are so very proud of how beautiful and caring each girl is...and has turned out. 
                                         

Life for them has been very difficult, they miss holidays abroad that we enjoyed before Amélie's birth and a lifestyle that we no longer have...they've never resented it or her...Amélie is pivitol to each sister and her cares are always their priorities...hugely proud of them !

                                          Good times and bad times but always hope...

Amélie with my Mum and fantastic Step-Dad

Swimming with Nanny

The bad times

And always the road to recoveries… nothing keeps her down for long !!
Amélie has absent semi-circular canals so she finally walked aged 5years 6 months, although she does have serious issues with balance and her deaf blindness.

I love my Daddy!

September 2013 chest infection

  Winter I despise you …
We have many hospital consultants and appointments, growth hormones daily injections continue and I provide Amélie intravenous antibiotics into her central line at home every 3 months and when poorly, but occasional when her bloods are seriously abnormal we have to stay in a couple of days !!

Eternally grateful and indebted to all the amazing professionals helping my girl along the way you are the unsung heroes of the NHS.

Amélie has had 22 trips to theatres, several surgeries, two Nissan fundoplication for reflux disease first one failed, many aspirations and this has made her lungs chronic, she has bronchiectasis, Amélie remains oxygen dependent, tracheostomy, gastrostomy doesn’t eat food but loves to taste food.  Amélie has no hearing nerves so she will never hear sounds or speak, she is partially sighted and requires 24/7 nursing care but our ethos in life is; Amélie must have inclusion at every possible level …

 
 

Life changed forever the day Amélie was born, as I have since come to realise, there are no regrets of our beautiful girl but there has become a whole host of nursing skills to be learnt, responsibility no parent should have to endure, countless campaigns for what her individual needs are and sleep deprivation beyond that of any newborn child…in fact we are 8 years on and the sleep deprivation is on-going with an expected 4 hours sleep that has become our norm, we don’t want pity its unconditional and she lights our home up with her personality like no other … such a unique rare and beautiful child. 


Amélie

A precious gift from God above
As man and wife, made from much love
We anxiously waited for your imminent date  
Hoping and praying you would not be too late

All systems in place and ready to go
Hoping your birth would not be too slow
Excitement and fear, emotions are high
Labour pain arrives, and there’s lots of sighs

A glimpse of you, it’s all worth the strain
Although our joy turns quickly to pain
Your first day of life, unable to hold
Our unique bond, I feared they stole

Your tiny lungs they made no sound
Your beating heart could not be found
Anxiety inside me started to grow
Tears welled in my eyes, then into a flow

You’re snatched away to another place
I can’t hide the grief, etched on my face
Doctors baffled, no answers can they find
Machines and wires, I am out of my mind
 
A devastating time, hurting deep within
Did I do something wrong?
Maybe a sin?
My heart is aching to hold you tight
But it’s difficult to see any glimmer of light
Your pain and suffering, I’m feeling so low
But I sense from you a refusal to go
 
All the pain you are feeling, I feel it too
And if I could make one wish
Then it would be to fix you
You have battled this long
You must never give in
You have to remain strong

And no… there was never a sin

For I realise now, how lucky we are
To have such an amazing child
Most definitely a star
Our precious Amélie always touching lives
Our wonderful daughter, despite odds, still alive

By Lesley Chan

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