30 October 2021
This October, Mike Langfeld will be running the Winchester 10k for Southampton Hospitals Charity to thank the NHS for the care given to his daughter Annie.
“In October 2018, my wife Becky gave birth at 38 weeks via emergency caesarean section at Winchester Hospital due to concerns about the size of the baby.
Weighing only 4.5 pounds, straight from birth there were complications as little Annie arrived anaemic, needing an emergency blood transfusion and ventilator to help her breathe.”
That morning, we were transferred to the neonatal intensive care unit at Princess Anne Hospital in Southampton for specialist care and treatment.
“We spent just over two months on the unit. Annie became insulin dependent as she was not able to control her blood sugars, and she needed regular blood transfusions as her bone marrow was not fully functional.
She received 1:1 care and was constantly monitored as there was a small hole in her heart and she needed a continuous supply of oxygen.
It was a lot for a child so young, and following tests, it was identified that Annie had a rare mitochondrial syndrome called Pearsons.”
Pearson syndrome is very rare, with less than a hundred cases reported worldwide.
“Her prognosis was not good, and she was only given a 50/50 chance of reaching two years of age.
Thankfully we made it home from hospital in time for Christmas, so we spent our first year together as a family, along with our son, Zach, then 4 years old.
We shared a wonderful Christmas together, and while intense with Annie’s medical regime, it was lovely to be at home.
Suddenly in February 2019, Annie became very sick. She couldn’t keep her milk down, and with the insulin she required, her blood sugars were incredibly unstable. We were admitted to the high dependency unit at Southampton’s Children’s Hospital on 17 February.
We got to know most of the nurses and consultants on a first name basis as we did not leave the hospital until late April.
It was during our lengthy stays my heart broke time after time at seeing so many poorly children admitted.
Annie was a little fighter though and continuously defied the odds. She was home by the end of April and despite three-weekly trips to hospital for blood transfusions, we managed to build some family memories over the summer.
However from October, Annie was admitted regularly due to infections and other issues relating to her blood sugars.
On 23 December 2019 Annie was rushed into hospital by ambulance with breathing difficulties and a rocketing temperature. Although a further course of antibiotics was required, I was able to take her home for Christmas Eve and Christmas Day morning.
However, on taking her back to hospital for her antibiotics in the afternoon, her blood results showed she was neutropenic and needed to be isolated due to the high risk of further infection.
We didn’t get Annie home until 27 December. Then on the final day of antibiotics, Annie started pooing blood at an alarming rate however thankfully we were in hospital at the time.
Annie would go on to spend much of January in the high dependency Unit, following a stay in the paediatric intensive care unit whilst on a ventilator again.
We were lucky to be home just before the pandemic struck. Apart from regular trips for blood transfusions, we were able to stay at home where we isolated ourselves.
Isolation with a vulnerable child along with our 5 year old was very tricky, as I also had to work full time as a software consultant. However, the planning from Annie’s consultant for the blood transfusions made the trips to hospital as painless as possible.
In September 2020 Annie became very sick again with an infection.
This time much worse than ever before. She was struggling with her oxygen levels, and needed regular blasts of high flow oxygen to bring her saturation levels back up.
Annie was in the high dependency unit and needed constant monitoring for the rest of September and the first half of October. Unfortunately the strain was too much on her fragile body and on her 2nd birthday Annie needed to be resuscitated and was placed on a ventilator.
On October 23, just one week after her second birthday, Annie died in Becky’s arms, surrounded by her family.
Annie was only 11 pounds when she passed away.
Looking back, we realised that Annie had spent a third of her life in hospital. I can’t thank the nurses and doctors enough for the love they showed us with Annie for many of these stays, especially the last one.
There were lots of tears, but I realised that whilst I hated staying in hospital at the time it had become our second home.
There weren’t enough play team or activities to keep the children busy, and for a parent staying with a poorly child, there were very few parent facilities.
That is why I am raising money for Southampton Hospitals Charity, to help support future patients and their families at Southampton Children’s Hospital.
This October I am running the Winchester 10k. It is the first time I have ever done a running event, so the nerves are starting to kick in.
Apart from playing football, I never really did much running, and with a recent calf injury, my training has not quite gone to plan. One way or another however, I am still determined to make it round the route!
We have around 20 people running the Winchester 10k with me, plus more people are taking part virtually from across the country which is really exciting.
Annie was a little angel, that despite facing such adversity during here short life, showed so much spirit, fight and love. The memory of Annie has to live on and despite being heart breaking to think of her no longer with us.”
My daughter passed away on 23 October 2020, so this race seemed a fitting legacy one year on. Support Annie’s legacy today: https://www.justgiving.com/fundraising/annie-daisy-langfeld