Blog update: 16th December reflection of a date we can never forget or erase, but equally we celebrate our NHS across two sites Wythenshawe and Pendlebury, Manchester

Today is a significant date in my annual calendar and memories. It could have all ended so badly this date, if it were not for some remarkable people. Starting with a nurse who visited our home 16th December 2005 at 15:15 unannounced. And a team across two hospital sites that came together on one site to save her. But there are some lessons to learn too that forever stay with me.

On the 15th December 2005 at 20:30 Amélie was unwell and appeared to be deteriorating, her oxygen requirements were increased, sats low, heart rate high and her respiratory efforts were increased and recession more than her norm. She was sleepy and not interacting although this was difficult to assess as she had spent several months in hospital. Two days earlier a community nurse had also visited our home and Amélie had sats of 70- 74% the nurse put this down to a poor signal, although that’s hard to quantify with the terribly poor quality of the machine we had been given, which was removed with immediate effect once Amélie was critical.

We made a decision to take Amélie to our local hospital Pendlebury 5 miles from home, rather than brave the motorway to Wythenshawe. Amélie was reviewed and to our surprise sent home without concern, in summary the doctor diagnosed her as ‘still recovering from post RSV+ bronchiolitis’ and to keep an eye on her and if worried bring her back.

We both felt very reassured, but I later felt very angry that I had not challenged the lack of review (hindsights a wonderful thing). The doctor an SHO had not requested a repeat chest X-ray, she was chronic lung in oxygen at home. There were no bloods requested or blood gas obtained, he simply listened to her chest sounds, bearing in mind she was very noisy transmitted sounds and difficult for most seniors to define without an X-ray and so he discharged her home late that evening.

The following day a community Nurse who had discovered she was sent home, randomly called to our home asking could she see Amélie. Angela one of our community team nurses pleaded with me to take her back in … I resisted her original request, weary of hospitals and explained the fact we had taken her in late last night and the doctor had given me reassurance she was ok. Angela was persistent and so I replied I would take her in but I would drive to Wythenshawe where she had open access because Lydia and her team knew her so well.

We put Amélie in our car at 15:35 and my mum arranged the school run, we set off from Worsley on one of the busiest motorways to Wythenshawe on a Friday at 15:35 … that decision alone gives me anxiety and flash backs regularly… and the what if !!!

On arrival to the Wythenshawe Darren was trying to find a parking space and Amélie was making strange movements with her arms appearing agitated. I asked him to stop I pulled her out of her car seat grabbed the oxygen cylinder and started running. Darren was shouting at me to not be inpatient and wait for him to find a spot, get her pram and suction machine … I shouted out ‘no something bad is happening meet me there’ and I ran with her in my arms.

On starlight Ward the nurse put her immediately into a cot, summoned for a doctor and an oxygen cylinder box placed over her head, the doctor came immediately too but he left for help because he couldn’t get any IV access in her. Darren arrived behind me, I was trying to explain the previous nights medical review. I was updating the nurse about how she was recovering from RSV+ from early November. As I was talking Darren started tapping my shoulder, I was stressed at this point she looked so pale an her skin was shiny too, so I dismissed him saying ‘one minute’. I was making sure her history was clear as this nurse didn’t know her and I didn’t recognise her from our open access and previous visits. Darren shouted ‘she’s not making any noisy breaths she’s gone still’, there was machine alarms and our girl had stopped breathing within 10 minutes of arrival to the ward.

The nurse ran for help and I started chest compressions on my baby while Darren looked on helplessly. Prior to becoming a Midwife I was a dental nurse and we had annual training, while I am thankful for that insight, I was a mess and forgot to put any breaths in (2005 resus) and that later also bothered me despite numerous staff reassuring me I had done all I could to help.

The crash team arrived and we stepped aside I had to drag Darren to the corner of the room, more people arrived so we then moved outside the room, the door was open and we were helplessly watching everyone from the ward corridor. They cut up the front of her clothes (I’ve kept these in her memory box) and the rest was just a blur. I started observing the time for some strange reason the 3 minute lack of oxygen was all I could focus on and how they had gone well over this time and I was shouting out the time (not helpful I’m sure).

Someone had tracked down our lead Consultant Lydia Bowden who appeared and I somehow felt secure at her arrival. They were still doing CPR and bagging and masking her and time was pressing on. Lydia stabilised her and then moved her to a single HDU room on the starlight ward and then came to speak to Darren and I, she asked us to come and stay with Amélie. I didn’t want to see her I was too scared, but I was reassured by Lydia that I needed to and Darren definitely wanted to be there.

During these hours Amélie kept plugging her ET tube and they continued to resus her intermittently, they hadn’t got lines in her she was peripherally shut down and she now had two holes in each of her tibia from the Intra-Osseous. A doctor later apologised they had to do the other tibia bone as the first hadn’t been a success. I didn’t care how many attempts I just wanted her to be alive. The team rotated around and took turns with resus but Lydia stayed at the top of her bed and she led all of this while simultaneously on the phone to Pendlebury for a bed, there was a member of staff holding the phone under her chin. There were no beds in PICU and this went on for many hours.

Lydia spoke to us frequently debriefing on how poorly she was and how she may not survive. With repeated blocked ET tubes and very thick green secretions she needed oscillating but with no PICU beds this was a dire situation and very long night.

Lydia finally secured a bed in Saint George’s London and a helicopter was requested. Two flight men arrived at Wythenshawe and presented to the room and a discussion took place. The two crew then waited outside of the room. I was to go with her and Darren would set off and drive to London. However Lydia couldn’t stabilise Amélie for the flight she kept blocking the tube and still with no descent access Lydia said she wouldn’t survive the flight.

At this point desperate for a bed and very angry with Pendlebury sending her home the night before . I cried out “why did they send her home last night” Lydia asked “who sent her home” and so I cried out again”why why why Lydia why have they sent her home”. I updated Lydia about the previous night to the acute referral ward at Pendlebury. Lydia asked for Darren and I to step out of the room and take a break while she made some more calls. A nurse took us for a drink and when we returned we were asked to wait outside Lydia was still on the phone, she then came out to advise that a PICU Consultant from Pendlebury called Sam was driving to Wythenshawe to try and stabilise Amélie and try and get a central line in for the helicopter journey to London.

Sam the Consultant from Pendlebury PICU arrived soon after and he told us too how Amélie was very sick and may not live. We were asked to step outside again while he tried to get a line in. We have now gone past midnight into the 17th while everyone continued to fight for our girl 8 hours and ongoing without any breaks. I can also imagine the stress this put on the rest of the unit.

Unfortunately, neither Sam or Lydia could get a line in and made the decision to let her bed go in London, stating again she wouldn’t survive the airlift journey and so after being there 4 hours the helicopter crew left us. It was at this point I broke down and couldn’t stop crying that the bed was being let go. I often wonder if another family and child somewhere else that night may have had a better outcome with that bed…and everything happens for a reason helps my brain digress matters!!

Even so, the despair we both felt as her parents at this point was unbearable ‘no bed’ my child needs that bed she’s going to die without it… I couldn’t comprehend this and my anger was mixed with a huge grief, was this the time we had to accept defeat we had been warned about numerous times before, to let her go, we were going to lose our girl we had tried so hard to keep safe for 11 months over the sake of ‘no PICU bed’.

Lydia knew that journey and fight, she knew our family dynamics and how we had worked around the clock 24/7 to care for her. The medical team continued with Amélie all this time, some 9 hours at this point, with a shift change too and people still intermittently resuscitating and stabilising her she continued to block off her tube again and again . I also recall the nurse who held the phone under Lydias face while she continued to talk to other units and people about Amélie and the need for a PICU bed frequently while continuing to work on Amélie. Apart from private conversations when her team needed to discuss plans and we were asked on occasions to leave the room, we most definitely observed our NHS at it’s very best.

Sam came to see us both before leaving to go back to Pendlebury, it must have been approximately 4am now 12 hours on from our arrival to starlight, he said he may be able to open a bed and he was returning to Pendlebury to re-evaluate there … we begged and begged and pleaded to him, I can’t imagine how Doctors cope with parents in these desperate times of need.

Approximately 05:30 Amélie was transferred to Pendlebury and oscillated. We quickly followed and we were met by Sam and further debriefed how critical she was. We didn’t know her fate at this time we just felt huge relief she was in a PICU bed after a very long 16 hours of intense medical resuscitation and support.

Amélie spent her 1st Birthday in Pendlebury and a couple of weeks in PICU. All the remarkable teams at Pendlebury along with Wythenshawe, Lydia and Sam saved her life. We’ve always remained grateful to Nurse Angela too for her persistence and random home visit.

But I’ve always struggled with some of the ‘why, if only and what if’

Why did the Doctor send her home without blood gas, bloods and chest X-ray and a lack of senior medical review knowing her medical history? Did he make this decision based on her individual needs or the pressure of bed crisis and fact Pendlebury was potentially full as they clearly had no beds the following day ? This will forever make me angry and I never did get to speak to the doctor personally to hear his view or tell him how his decision to send her home affected all our lives forever that day. Where was his direct apology, that’s the very least we expected was some honesty ?

What if the motorway would have had traffic queues or road works? Why did we set off in the car at school closing peak times ? what on earth were we thinking !! False sense of open access security at a hospital not local to where we live … although we had 100% faith and reassurance in Lydia in hindsight we needed to be local to home.

If only the community nurse had questioned what resembled a pre-war sats machine and it’s quality and not been quick to dismiss this as a poor signal and looked at all her vital signs, in hindsight she was deteriorating. Why didn’t we spot these changes sooner ourselves, why didn’t we disagree with the SHO and demand bloods and to be admitted ?

Are your brain abnormalities attributed to the lack of oxygen you suffered leading up to your pulmonary arrests, or during the lengthy 17 minutes or so of initial resus , or charge syndrome related ? We will never know if we could have prevented this for you Amélie had we acted sooner. Did we as your parents let you down here Amélie ?

Conversely, what if Lydia, Amélie’s Consultant from birth who knew all her history so well, hadn’t driven in to the starlight ward, would someone unknown to Amélie have fought for so long or would they have called time and stopped her resus sooner? Doctors like Lydia and Sam who go above and beyond their contracted hours every day no doubt for their patients are unsung heroes of our NHS.

What if Sam had not managed to open that Pendlebury bed or been able to drive to Wythenshawe in those early hours?

These are now rhetorical questions but they do feature regularly in my dreams and forever on this date.

Why are our medical doctors pleading up and down the U.K. to secure beds for sick children especially in respiratory season, working out ‘who is the most needy’ this angers me the most. I would never take something she didn’t need over another child in more need, but Amélie also had her heart surgery cancelled because there was no bed and then when she was rescheduled, dare I be honest and selfish and say she was pipped by a child more needy, how must those parents feel when another child gets their child’s slot in theatre? How do doctors feel when they are at the forefront of telling parents this kind of news?

Doctors should not be put in these predicaments and neither should parents. The screaming, crying and verbal abuse I have off loaded over the years to our medical team makes me so sad and sometimes embarrassed. I’ve had to plead when expressing our girls needs, no parent should have to beg for a bed. When will the Government invest properly in our NHS and stop teams being challenged daily, and families suffering like this, when they already have so much to contend with caring for their sick children. If the medical profession didn’t have to deal with all the bed crisis managing and bureaucracy they could focus more on the actual clinical needs of their patients.

So hello 16th December 2017, we will continue to reminisce the pros and cons of that date, but we must focus and celebrate today. Amélie continues to defeat the odds and continues to thrive. All thanks to some very special medical doctors, nurses and teams across two hospitals who made it possible, kept her alive and continue to care for her … may there be many more 16th of December.

Amélie I sincerely hope one day you are able to understand or even read some of these posts. The 16th December is a reminder for your parents every year of your courage, strength and determination to defy the odds. Of your resilience in those early months and years and some truly wonderful people who have cared for you, that we will continue to think of often.

25th December 2005 Pendlebury Hospital, Manchester

Happy Christmas from Amélie and all the Chan family X

Thank you Lydia, Sam, Angela, Fran and so many many more I will never know all your individual names, but I will always be thankful to you all. And to Santa who made sure he visited Amélie overnight on the 25th and left us this picture. To know you were not left out Amélie on your very first Christmas aged 11 months 2 weeks melted both our hearts #littlethings.

Love and protect our NHS 💗


Blog update: Holiday summary was it worth it?

Our 3rd holiday abroad since Amélie’s birth  12 years ago is sadly over.  I always say ‘never again’ on return, not because it wasn’t fabulous and fun, but the work buildup and pre medical preparation is stressful, challenging and equally exhausting.  I’m sure most parents of children with disability would resonate with this summary ! 

For example; obtaining your fit to fly letter, medicines, the expense of hiring the oxygen converter that she requires to fly in and for during overnight sleep.  The countless insurance quotes, all of which were unrealistic and extortionate and the medical equipment and spare machines required takes some military planning.   

Once there the time spent with all her family is the main reasons why it’s so very much needed. The memories to treasure and also to enable Amélie to explore her social interactions, proprioception and sensory needs, just like her sisters have during their younger years, is essential and of course it’s all about her ability, lived experiences and inclusion too. 

I also live with some sun worshipping kids and husband. Darren definitely misses his sunshine holidays and these are proving beneficial for his arthritis too. This next picture is Amélie’s eldest sister and Children’s Nurse Gabrielle, who is a great help with the medical needs of Amélie while away. Although all 3 sisters play a huge role in her cares, play, fun, medical and personal hygiene needs to support Darren and I. 

Darren and I find the down side to being abroad is the pure lack of sleep, as we share a bedroom with Amélie and as such the machines alarming is much louder and disrupting all in the same room.  Amélie has over the years acquired  mini sleep partying during the night time and there are risks to her safety as she wanders between 2-5am.  At home she’s safe in her own visual environment to a degree.

 Although this years holiday clearly had some challenges for her with her absent semi-circular canals and balance issues and as such the leg and thigh bruises were vast. Amélie negotiates her sensory impairments and balance issues far better in her own home and the furniture is never moved for this very reason. 

The airport, medical equipment and all that goes in to travelling with a disability was also a challenge. The assistance for disability support was great at Manchester airport, but less so at the receiving airport.  And getting on and off the plane wasn’t the easiest and she doesn’t tolerate crowds or queues, so endless apologies on her behalf take their toll as do people’s ignorance. 

Amélie had 5 suitcases of luggage just for her, if taking into account the gastrostomy feeding, two of each machine- spare for machine failure, converter batteries bag for the oxygen converter, suction and converter itself, nappies and gastrostomy tube feeds for the week also bulk this up.
The other stress is no nappy care changing  facilities on the plane,  this can’t be achieved in a cabin loo !! so no options to change her nappy if required. I know so many parents in the disability arena will totally grasp this worry in all public places. A major reason why we don’t often go out in public now as changing a 12 year olds nappy is virtually impossible in most places.  This does always give me huge anxiety going out and during flights. 

The return flight was the usual battle of the wills about her luggage allowance, for medical luggage and on all 3 trips this has been questioned and challenging. Flight companies do not provide letters or record on their systems with the disability allowance for the return flights. Nowhere was it recorded of her allowance despite being reassured back in the U.K.   I’ve no idea why and we’ve raised this numerous times and been reassured.  Unfortunately, every trip has been the same and being asked to pay for the excess luggage is unacceptable, when it’s already far more expensive to travel abroad with a child with a disability. That’s my next mama letter and mission for disability I think !!! 

So why bother after all the above … well it’s simple, observing her excitement and gorgeous quirky face,​​ her sisters love of entertaining her and all the precious family time together in the sunshine leaves us all feeling wonderful … I think the pictures say it all !


Blog update: GA today and so many to thank #RMCH

Today Amélie had a planned GA for CT of her lungs due to a recent bleed, to see if her bronchiectasis is deteriorating following a recent week long stay in hospital with presumed haemoptysis. Her lung X-ray had also shown new changes too and her last CT was several years ago. 
Bear ready to go and nil by mouth … 

The anaesthetist Rossaline Morley was outstanding, she knew we had previously asked could Amélie have an awaited eye procedure amalgamated to save her another GA. We were also anxious about a lengthy 12 month delay for the eye procedure.  Rossaline said she would ask the eye team who had a list today, if there was any time aside and if  they would be willing to do the procedure… to our amazement they agreed and the whole MDT teams went above and beyond today for Amélie and saved a repeat GA and lengthy waiting list not forgetting her discomfort. 

Dr Claire Murphy from the Royal Manchester Eye Hospital came to see Amélie for a discussion about the pros and limitations, but did agree to see Amélie and so we consented and had both procedures today. 

We didn’t get the desired outcome for her eye procedure because CHARGE syndrome has some bizarre idiosyncrasies.  We’ve been dealt some harsh news over the years due to the complexity of the syndrome. There’s lots of anatomy and physiology that are either absent or never where they are supposed to be positonally, or completely absent and didn’t form at all inutero e.g. Absent semi-circular canals, absent auditory hearing nerves, absent cochleas, and cranial nerves not where they should be. 

On a positive what today has done is given us the news we needed to now go away and make some decisions about. There are  three other options and we will have a follow up in approximately 6-8 weeks time. Had we have waited over a year for the initial GA and eye procedure we would no doubt have been upset by today’s news. Oddly we are not upset, we feel very grateful to everyone who tried their very best today.  Taking all in to account her  chronic lung disease and one GA or two GA’s actully matters and is always a worry! 

The theatre team never cease to amaze us both. Bear was present as always with his first cannula, sited 2 years ago and still in place. Amélie is very difficult to obtain IV access and we do miss her central line that  had to be removed.  Today the anaesthetist had 5 attempts and she ended up with a cannula in her foot. What was very endearing is Bear came out with a matching cannula in his foot. That’s because the aneasethetist had listened to every word about Bears previous story this morning and how Amélie was hysterically happy post GA last time to discover Bear had the same cannula as her. 
Little things …

The ODP Paul Clare was a calming delight and we giggled about Bear and his VIP chart needs.  Thank you also to Robyn and Susan the Radiographers who were also perfectly friendly, kind and caring towards our girl. To Rachel our respiratory nurse who we bumped into on the corridor and she managed that friendly catch up even though I know she will have been so busy. 

You trust all these strangers with your most precious child and we always feel like she gets the very best, considering often things don’t always go to plan. Even so, everyone today gave their very best and made the day manageable. We may all be pro at theatres, GA and surgeries and she’s for sure into double figures, but that doesn’t make it any less scary and anxious for our family. 

We can’t for the life of us remember the nursing advanced assistants name on the short stay ward who cared for Amélie pre and post (feel terrible about this as she deserves a thank you) and the recovery team for their patience with two anxious parents! 

Today we observed our NHS at its very best, as always challenged and busy, safe but most of all kindness, listening, consideration and compassion shone. 

RMCH is undoubtedly the best children’s hospital in the U.K. and we feel qualified in 12 very complex years to validate that statement. 

Sisters 💗

Blog update: All good things must come to an end … 

Firstly, can we give praise and thanks to the following teams at RMCH  … 

  • Dr Fran Child for her respiratory expertise and knowing our girls lungs so well. 
  • Ward 85 nursing teams, this ward is full of kindness and happiness
  • Rachel for organising home IV’s 
  • Dietitian review and change to gastrostomy feeds to reflect her teen years and mineral and vitamin requirements. 
  • ENT for the prompt camera review 
  • Dr Banerjee looking after her endocrine and hormones as we may be coming into pubertal changes soon 
  • Dr Dashti monitoring her scoliosis 
  • Sid Banka and Sofia Douzgou genetics and the fab Charge Clinic reviews 
  • Diana Nursing teams for picking up the IV’s when I’m at work 
  • Cardiology, simply amazed that we now only need annual reviews – how far she’s come 💗

Derian House Hospice for their continued support and loving care. 

What’s new … 

Today we had a really excellent and thorough Psychosocial review by Daniel Weisberg in the Harrington Building and this is the first time we have received a BSL interpreter for a medical assessment. It’s difficult to judge Amélie as often she will not sign to strangers … which most parents would be delighted with and the old danger-stranger rings bells, but it can be rather frustrating where Amélie is concerned as we’ve no other means of communicating, so when she switches off her cooperation to sign we find ourselves in limbo with her. 

We go back in July for the outcome of the assessments and a further referral to Deaf Camhs for hopefully some practical parent advice, help and support in understanding what is happening with specific behaviours and how to try to understand Amélie better for her adolescent years. 

Sleep has become a significant problem and we’ve gone from a child who slept mostly well (apart from parent caring of suctioning, feeding, oxygen and machines alarming all night) to a child who’s awake partying every night and we have no idea what factors have changed this… apart from perhaps age and hormones… both Darren and I agreed that age is not on our side in conjunction with the sleep deprivation and so we are both struggling very much with this aspect of Amélie or her syndrome. 
Medical update: 

After 12 months without an admission it was inevitably going to come to an end.  And it did with a scary early morning entrance into Amélie’s bedroom and what looked like some sort of murder scene as her walls and ceiling were sprayed with blood. 

Amélie bled presumed haemoptysis after ENT ruled out her trach and upper airway. The radiograph showed some changes to her already bronchiectasis diseased lungs and she also had a parainfluenza type 2. 

The plan is for two weeks of Tazocin IV’s at home and once she’s well enough to tolerate a GA she will have a CT as her bronchiectasis may have deteriorated and she hasn’t had a CT for 8 years now, so that’s her current respiratory plan.

Amélie is partially sighted due to optic nerve colobmas and with no hearing or speech this means that the vision she does have is precious to her.   The eye hospital have referred her for a GA and plastics to review her eyes due to persistent irritability and eye streaming. Her eyes are always chapped and sore and we’ve treated this as heyfever for years,  only to discover the eye and socket in CHARGE Syndrome are not a snug fit and problematic, but they also need to rule out that the ducts are not blocked.  

What is frustrating is the eye hospital plastics stated there is over a year waiting list for this small procedure, which I can to an extent comprehend working in the NHS, but not when she’s no hearing and relies heavily on what vision she has to communicate and make sense of her world. 

The future is bright … 

The Charge Syndrome clinic at RMCH has been a fantastic organised experience with a tailored service and slick referral process by Sid Banka, Sofia Dousgouz and the team in genetics in Saint Mary’s.  This means all the vast issues of the complexity of CHARGE Syndrome can be discussed in a one stop MDT clinic approach and this is of huge benefit to children like Amélie. I hope to support the clinics and continue to support new parents with a group I set up years ago for families with a child born with Charge Syndrome. 

Personal …
All babies are back home, Livi came back from USA and I’m seriously happy about her decision to come home and stay home.  Gaby continues to develop and consolidate her children’s nursing, she makes me so proud of her appreciation and understanding of the family dynamics for those families who are long term patients. Fleur continues to be a beautiful sister and young carer who recently went to Lourdes and wants to be a volunteer when she is 16. Amélie went to Keilder with Derian Hospice for her first break away from her family, she adored it but we were left heartbroken for 5 days … hard letting go of the parent strings but some independence is essential for her adult years… let’s not ponder on adult years or services !

I became a Matron for inpatient services overseeing 4 wards at Saint Mary’s Manchester and I’m beaming with pride about my new role and responsibilities. The more I have developed in my midwifery career the more driven and passionate  I feel about patient quality and experiences of others.  

I’ve lived and breathed inpatient services with Amélie … the very little things are the most significant and desirable for me personally and I believe the majority of people want human kindness and to feel safe above all else and those things are in our gift as professionals to deliver freely, setting the all other NHS challenges aside they actually cost nothing !!!! 

Reflecting … 
We missed Joanna O’Toole during this admission, there was no friendly reassuring appearance in A&E or Ward catch ups. I’m delighted she won the patients choice RCN awards and Jo will hold a special place in our Channy hearts forever for her kindness and the compassion she has given to all 6 of us. 

Sorry thats such a long catch up,  it’s hectic in the fast lane ! 

Blog update: Charge Syndrome UK support group, RMCH new clinics, families & empowerment 

RMCH holds a Charge Syndrome clinic this coming week and I’m proud as the UK Facebook support group founder to be invited along as a parent advocate to support the clinic and our parents and children with Charge Syndrome.  

These specialist doctors have an interest in charge and it certainly needs a specialist MDT clinic approach, as so many aspects of the body are interrelated and so many different consultants and clinic specialities required. 

For our families to arrive and have one clinic for their review is exceptional and a fantastic MDT approach  for the child and families… hats off to RMCH for setting this up. Whilst we have received invites to Birmingham and GOSH it is too far for families to travel from the North West. 

Our UK support group has grown massively since I started this and we now have over 750 families from all over the UK. It’s great to know that geneticists and doctors direct families to myself and the group for additional support. 

I am thankful to geneticists and doctors  for providing our contact details to families to make contact. I think over the  last 10 years knowing they have a parent working at the trust with the support group has been a vital contact for newly diagnosed parents.
 I have supported many families on NICU and children’s wards at RMCH and supported their journey thereafter. I wish I would have had this parent contact back when Amélie was a baby, when I felt so incredibly lonely and uncertain that she would even survive or have a future. 

Today in Derian House Hospice we met a newly diagnosed adult now aged 23, who has struggled through those 23 years not knowing her diagnosis or prognosis. Her parents finally have a genetic name to the symptoms to be able to makes sense of her future care needs and tap into a more tailored medical management now they know what the condition is. 

The group is able to offer emotional and practical support to new families and give them strength and hope in the early years. We have doctors, genetics, psychologists and  charities such as sense also in our group supporting our families.  Our children’s stories and pictures give new families encouragement that with the right medical support they can and do achieve. 
Sadly approximately 40% of children born with Charge Syndrome will die under the age of 5 and we also continue to support families through bereavement too. 

Off topic … 

Amélie had an amazing week in Derian and we are thankful for all the amazing teams who support us too. 

Happy birthday Amélie 💗

Amélie Mia 

Born 12 years ago this little lady arrived and that day changed our lives forever. And from that day forward we’ve committed our lives to ensuring yours is the best it can be. 
To those who don’t get me it’s very simple, I’m obsessed and driven to improving patient experience because I’ve spent too many hours by her bedside  thinking ‘if this were your child’ 

I no longer feel sad about what should have been a happy and amazing birth. I thank God for her courage, determination, tenacity and strong willed character that’s helped her to survive those early years and taught us all so much. 
To everyone in the NHS who played a part in her progress, not enough words can express our gratitude … thank you  

Blog update: Another Milestone we never thought Amélie  would reach. 

Today Amélie attended her first day of secondary school. With three other siblings already been through this process, what’s the big deal right ? 

Without a number of people she never would have made it … 

We want to take this moment and time to thank some incredibly special people who helped her reach this next massive milestone in her life. 

Neonatologist Consultant  Lydia Bowden and Respiratory Consultant Fran Child,  two women who we can never find enough words to describe their wonderful care that helped get her past those early critical years. Gill Humphries for all her safe surgical procedures, there’s not many children who have had three Nissen Fundoplications, Gill you’ve been lifesaving for Amèlie. 

Respiratory lead Nurse Joanna O’Toole from RMCH Manchester, we’ve so much to say and where do we start. Jo you’re attention to detail of all our family dynamics never ceased to amaze us both. You are the most selfless woman in every way. A nurse who smiled every single time we met and adores her job, 38 and a half years in the NHS such a caring, kind, compassionate nurse who goes the extra mile every single shift. You’re silly dances have us all giggling and not just Amélie. 

A Nurse who went above and beyond her contracted hours to make sure Amélie was safe, her care appropriate and always listened, above all else she listened and acted when we had worry. We were never made to feel silly or rushed and Jo always responded to concerns, often on days off a response and planned reply would arrive. 

We made a relationship and bond so special, that now Jo has her own fight we feel so very saddened that we can’t help her. Jo will remain in all our hearts forever as a nurse who should make us all feel proud of the NHS and what it is that  is truly required to be a ‘real nurse’. 

Jo has strong compassionate values for patient care and the patient experience and her huge display of pride always visibly worn on her shoulder, Jo you’re family must be so proud of your achievements  … You are undoubtedly an inspirational role model to us all.   

Family: Three sisters stimulating her and loving her unconditionally and my amazing parents who have supported our every step of the way. There is so much truth in the love of a good strong family when children are born with a disability.

Diana community nursing teams and  Derian Hospice we thank you for your continued support.  

Stood proud under her wall of hearts where each heart hangs for each year since her heart surgery. 

We are thankful to you all,  you should be truly proud of the part you have all played in this incredibly strong willed young lady’s life this far. 

Love from Amélie & the Chan family 💖

Blog update: #Nurse #notanurse_but & home from hospital 

Today we celebrate every #nurse who cares for the sick, disabled and frail. Heros of our #NHS a vocation in life to want to make a difference and go the extra mile. 

Today I celebrate my husband Darren who gave up his career and became a nurse to Amélie. This role doesn’t come with a salary or 6 weeks of annual leave. This role is unconditional father and daughter love like no other.

Darren has had to learn to care forAmélie and her gastrostomy and tube feeding 12 hours every day, tracheostomy and suction cares. Listen to medical jargon and opinions and language and terminology he was never familiar with. Suffer from a lack of sleep and long term sleep deprivation that is now his norm. 

Learn sign language and manage the hygiene needs of a female aged 11 and her incontinence needs, not something most fathers could or should be doing. 

We’ve been in Royal Manchester Children’s Hospital for 6 days with a virus and bleeding from her trach. Darren has managed to provide care to enable me to maintain my job and then gone home at nights and manage a home and siblings needs. 

We shift handover form each other ensuring she is never left alone, in view of her communication needs, Amélie can’t speak or hear. 

So today I will celebrate notanurse_but to my husband, daughter and myself and every other parent caring for a disabled child 24/7.  
There are no days off from this unique nursing role, but the humbling facts are we wouldn’t change anything, because the love and happiness she brings daily has taught us both new values in life and what truly matters and that’s the love of  #family 

Thank you to all the nursing staff at Royal Manchester Children’s Hospital for your support and care over the years. 

Last weeks arrival to Ward 85 

“Let’s get out of here I’m feeling much better” … Amélie is now waiting on the theatre list for a new central line … They certainly keep children at home on intravenous antibiotics with their family 💞

Happy Nurse day to our daughter Gabrielle you’re the best sister and nurse we know ❤️ 

Blog update: #LEA meeting and #deaf secondary education. 


That’s what we were prepared to do Thursday, as we consulted and met with the Local Education Authority (LEA) to request Amélie remains outside of the LEA for her secondary education, September 2016 with Thomasson Memorial School for the Deaf in Bolton.

Having been through the process before of having  to prove why you think your child should be educated outside the LEA, we were ready to do battle. 

Approximately six years ago we had to plead that “sign a long” wasn’t a sufficient language to educate and help Amélie to communicate. Especially in view of her complete bilateral auditory nerve agenesis.  We also had the additional challenges of optic nerve coloboma vsiual impairment and how she was going to learn to sign using what useful vision she does have. 

The  LEA and the local special needs school stated they were meeting all Amélie’s educational needs.  They had a psychologist review Amélie in an attempt to support their views. I strongly believed they thought she wouldn’t be able to learn to sign, due to her neurological and visual impairments. We also sensed she was written off cognitively, as a child that would not achieve a language. 

Once teachers were aware of our requst to move Amélie to a school for the deaf, we quickly noticed a change in their attitudes and behaviours towards us. There were hurtful comments of “she’s not the brightest child in class” and we were made to feel the school wasn’t good enough for Amélie anymore, when this was not the case. 

Teachers questioned why “sign a long” wasn’t sufficient for her to learn. In one meeting with the LEA and the previous school, they were asked to define the difference between sign-a-long and BSL. 

We were shocked to find they couldn’t define the two styles of sign (millions of miles apart in communication for the deaf). Yet the authority had agreed to sign-a-long as a proficient language to support children deaf in their authority, with no option for BSL/SSE.  Sign-a-long supports children who can hear and the school knew Amélie could not hear any sounds and as a consequence would never speak.

An example of this is reading a whole story book to children in class. With perhaps one sign per page, e.g.  “ball” so Amélie would sit and watch everyone reading the story and the only sign she would pick up was “ball” for the whole story. This is why you need to be hearing for sign-a-along to work.

As soon as we realised that this was never going to widen Amelie’s communication or open up the world around her, that’s when we challenged the LEA.  Eventually and exhausted by the whole process Amélie  was placed in a school that used appropriate sign and we’ve never looked back. 

But now we faced a different challenge for secondary education.  Our LEA have a school within the authority for complex needs children and offered Amélie a place and a 1:1 adult sign communicator who would sit with Amélie and sign the lesson to her. 

We went to see the school it was high functioning overall and appeared a good option or should I say our only option. The thought of Amélie having no signing peers would be a step backwards for her and a massive one at that. The concept of a classroom teaching GCSE and a 1:1 adult with her all day saddened us both immensely. Who would she socialise with a play time ? Who would sign to her ? 

Amélie unlike her three sisters, will not sit GCSE exams and while it pains me to admit this, it’s a reality. So why would we want her sat all day with an adult trying to support this. Amélie just needs to be happy and socially interact with children deaf and signing, to play out, to stick and glue, colour, count, learn to write her name, have messy sensory play, bake and learn some life skills for her adult years. These are her needs and education and the most important aspect is being with children who sign. 

When Thomasson Memorial announced it was going to consultation to extend the school age to 16 years, there was a ray of hope. This has since been approved and now we have met with our LEA to ask can Amélie stay with her peers outside our LEA.

The boxing gloves were out should this be a funding issue and my husband was prepped in advance of what to explain and why Amélie needed to stay at Thomasson. 

So the shock horror when the LEA officer agreed that our authority couldn’t offer what Thomasson could, left us all speechless for once !! The LEA officer said she would support our request, but would need to go back to have the application approved by her manager. 

I finally feel like someone is listening for once and there will not be that “battle”. The battle that zaps every ounce of energy that you need to conserve to enable you to care for your child. The words “discriminate and inclusion” will not be required on this occasion and I have to say this is a welcomed sigh of relief. The older we become the more exhausting the world of disability can be, especially the politics ! 

For once I feel thankful she listened and agreed it’s what’s best for Amélie … Isn’t that how all education and care should be ?

Blog update: Graduation for the love of Amélie and her Uni friendships ?

Gabrielle graduated today at Edge Hill University BSC Hons Children’s Nurse.

As you can see Amélie wanted to play a star role in her eldest sisters celebratory day.  

I would like to think her choice of career had something to do with following in my footsteps after 31 years  working in the NHS…and counting ! 

But I suspect not … the little character in the below picture, her youngest sister Amélie is most likely to be the key factor in where she is today.

Gabrielle from the age of 11 spent her younger years, most evenings and weekends playing big sister and entertaining her two younger sisters on the corridors of hospitals and children’s wards, while Amélie would be critical in intensive care and back and forth to theatres.   

I often worried that Amélie’s birth and years in hospital would be responsible for how our girls grew up. I feared our absences and being passed from grandparents to my brothers families would impact upon their teen years. 

We had a 14 month old toddler too and my parents played a huge role in her care and we are eternally grateful to our family for their support through every challenge Amélie’s condition threw at us. 

I don’t believe we have allowed the life changing events of Amélie’s birth or raising a child with a disability to change our family dynamics. If anything it made us stronger, closer and more determined than ever to care for Amélie. We were all on the same page from the outset.

Our daughters albeit 9 and 11 wanted to be included in her cares. They asked to learn to suction and tube feed. They asked how her machines worked and participated in all her cares from changing gastrostomies and tracheostomies to hygiene and comforts. Even Fleur aged 14 months old treated Amélie in her early years as any other sibling and nurtured her out of her sensory discomforts. 

Gabrielle very quickly learned what mattered to Amélie and her parents. And when the time came to make some decisions for a career I felt huge pride when she said “children’s nursing”. I knew she was a natural with children poorly and or  like Amélie. I knew she understood a parents journey and experienced so much for a teenager, that these life experience skills could be further developed.

So today’s graduation was a huge day and we all made sure we were there for Gaby, (Apart from Olivia who has a scholarship in USA). 


I wonder where she gets her poses from  ? 


Friendships made at University I know will last a lifetime. The girls learnt some basic sign language to take with them to their new nursing domains. In fact Nurse Naomi (2nd from the left) has more sign language now than I and that fills my heart with such happiness. 

I feel so proud that Gaby wanted to support my NHS changed day pledge and taught her cohort the basics of sign language but most importantly deaf awareness. The Joanne Leadbetter special award she was given today summed her up perfectly. 
There is ignorance of deafness and exclusion in partnership of care plans in the NHS and lack of knowledge that saddens me most. The isolation Amélie has experienced with limited sign interaction has been the saddest of our journey so far. 

But with this new era of deaf awareness and these amazing children’s nurses now coming through University with some basic sign language and awareness, fills me with such optimism for the future. 

Only if Universities continue to try and encourage its use… However small the sign I’ve always said its better than none.  And no acknowledgment of a deaf persons communication needs is unacceptable. 


So I wish our girl all the very best in the world with her nursing career. 

I pray she always remains genuine and true to herself and her beliefs. 

I hope she remembers behind every sick child there are parents often frightened, sad, grieving, angry, exhausted, frustrated, disillusioned and not there by choice. The majority are hanging on to miracles and hope. 

Behind those roller coaster feelings are parents who are often thankful and simply want your engagement, showing interest  and personalising care for their child. They want professionals to come down to their level and understand their vulnerability too. 
The NHS faces challenging times ahead anyone incolved understands this. But no matter how challenging remember the ‘why ‘ and ‘how’ your journey into nursing began.

We love you and we are so proud of you today and always Nurse Chan.