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 💗