NHS Change Day - A Mother's Pledge from Larchmont Films on Vimeo.
Please watch this video.
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.
|The Midwives BBC 2, St Marys Manchester my lovely colleagues and I. (That's me with the file.)|
|We were married on the island of Jamaica in 1991|
Gabrielle, is 19 and following Mum's footsteps into nursing. She is a student Paediatric nurse at Edge Hill University
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.
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 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).
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.
How did you finally get a diagnosis?
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.
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...
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|
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 !!
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 …
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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