After a premature birth my baby girl had been home for just 9 days when she stopped breathing in my arms. Today is the first year anniversary of that day.
Born prematurely at 29 weeks weighing 2lb 8oz, Amelie spent the first 11 weeks of her life in hospital. She came home on her 40 week due date, the 28th December. Her triplet sisters had come home on the 22nd December, meaning Amelie spent 6 days on her own in hospital, including Christmas Day. It broke my heart that she spent much of those 6 days on her own as we snatched visits to her, between caring for her baby sisters and a then 3 year old brother at home. Each visit she would hold me so tightly, as I did her, and I desperately wanted her home. I asked the nurses to give her extra cuddles in our absence.
Home at Last
We were delighted when she came home on her due date. The relief of being able to care for our babies in their own home, instead of being surrounded by alarms, medical paraphernalia and staff was enormous. I’d happily of never set foot in a hospital again, despite our enormous gratitude to the NHS for saving our lives on more than one occasion.
Looking after 3 babies on a three hourly feed cycle and their big brother was not for the faint hearted. It would take up to two hours to feed them, half an hour to express my milk, leaving just enough time to get ready for the next feed to start. My husband and I grabbed snippets of sleep where we could. Those first few weeks became about survival. We’d occasionally get time to grunt at each other as the days passed in the haze of routine. We were deliriously tired, but deliriously happy, our babies were home and there ensued a beautiful chaos.
The Vulnerability of Premature Babies
The Doctors had warned us of their vulnerability to illness due to suppressed immunity following their premature birth. We did all we could to keep them safe based on their Paediatric consultants advice. Despite this they all became ill and started to drop their feeds. We were particularly worried about Amelie and when David took her to the GP on January 4th, we were advised that her chest sounded clear.
The next morning I felt relief when I managed to get Amelie to take 70ml on her first feed. I thought it meant she was getting better. As David was home I had time to hold Amelie and give her a really good wind whilst he carried on to feed Etta. As I held Amelie with her little chin resting on my shoulder, I became aware that she felt very still.
Amelie Stopped Breathing & My World Stood Still
Everything went into slow motion. David walked into the room at that moment and I stood up and asked him to look at Amelie, explaining that she felt so still. I remember an urgency in his voice as he told me her lips were blue, she’s not breathing. I screamed and lifted her into the air to look at her. She was lifeless.
In that moment I dropped her into a backwards motion. As I did so it was as if she took her first breath. I tried to call 999 on my mobile and fumbled to find emergency services. I screamed as I had to enter my passcode to get the keypad up to dial 999. As I did so Amelie stopped breathing again and I dropped her backwards again.
This was to happen several times during the call and I became hysterical. David took the phone off me and informed the operator of what was happening. When the paramedics arrived, Amelie was breathing and pink.
Back to Hospital
David went with Amelie in the ambulance whilst I looked after Etta and Maya. Felix was with his grandparents. Everything felt surreal. I half expected to be told we’d imagined it and that she was fine. Little did I know that she had stopped breathing in the ambulance and they had called her in as a cardiac arrest as they raced her to A&E.
David kept me updated and told me she was being looked after well. The doctor and nurse on duty wouldn’t leave her side. The nurse telling David “no lunch today, I’m staying with her – I’ve got a feeling about this one”.
Needing Help to Stay Alive
I continued to believe that Amelie would be sent home that day with an explanation and everything would be ok. The next time David contacted me was to inform me that Amelie was being put into an induced coma and transferred to a paediatric intensive care unit.
Amelie had continued to stop breathing. The doctors were worried that her lungs couldn’t cope and whilst she was responding to the staff bringing her back round, they couldn’t let her continue as her little body was becoming too tired. Amelie now needed help to stay alive.
Neighbours rallied round and took me to the hospital. When I arrived at the hospital it was to witness a doctor manually operating a machine to breathe for Amelie whilst they waited for the emergency paediatric transfer team. Amelie was being transferred to the nearest PICU bed in Stoke.
No “What Ifs”
I asked the doctor what would have happened if she hadn’t been in my arms when she’d stopped breathing. The doctor touched my arm and said “she was in your arms, we don’t need to think about what would have happened if she hadn’t been”. The thought that in normal circumstances I would have had to place her back into her cot sooner in order to feed her sister made me shudder. We were so fortunate that David had been home that day.
As David left with our neighbour, I waited to be transferred to Stoke with Amelie. I couldn’t take my eyes off her little body lying there covered in tubes and wires. This was so unfair that she should have had such a short time at home before being back in a hospital fighting for her life. I tried to find a private place to cry, but couldn’t find anywhere and broke down in the corridor. A woman came to comfort me.
For 3 days I stayed by Amelie’s bedside whilst family helped David at home. During this time Amelie had her lungs drained by a team of physiotherapists several times a day. Tests revealed that she had paraflu.
Brought out of her coma
Amelie had to be brought out of her coma whilst still intubated as they monitored that she was able to breathe for herself. It was distressing for her and I was relieved when doctors said it was safe to remove her ventilation, though I was advised it may not be best for me to observe its removal. To hold my baby in my arms again as she was able to breathe for herself was magical. It meant we were closer to home, again.
On the day I brought Amelie back home, our smallest triplet Maya was blue lighted from our local A&E to the nearest HDU as her health deteriorated. David and I saw each other briefly whilst I said goodbye to Maya as she was taken in the ambulance. I took Amelie and Etta home and David stayed with Maya in the HDU. Amelie cried all night in pain as the morphine left her body. I felt spent, in shock from what had happened and desperately worried about Maya, who was more vulnerable due to a heart condition.
Living with Post traumatic Stress Disorder
Following a life threatening birth trauma at 29 weeks gestation, I was diagnosed with PTSD. Unfortunately, as a family we have experienced several medical traumas since.
I am only able to write about this experience due to undertaking EMDR and CBT therapy. Prior to both, I could not bear to think about the medical traumas we have endured. I lived in a constant state of anxiety as to what was going to happen next. I want to write more about my experience of managing PTSD in the hope that it can help others with similar experiences.
As I write this we are preparing for Amelie to have surgery next week. This is to remove a lump in her neck. Amelie is being fast tracked to surgery as the lump is compromising her airway.
Due to the proximity of the lump to Amelie’s airway, we have been informed to call an ambulance in the event of stridor breathing. Despite my best efforts to keep the girls safe from germs and out of hospital this winter, Amelie and Etta both got croup last week and were blue lighted to Birmingham Children’s Hospital on Christmas Day with stridor breathing.
Clearly the breathing concerns related to Amelie’s lump have meant great anxiety, but thanks to the work I have done through CBT therapy I have been able to take a more mindful approach, living in the day and having an action plan, so I am not overwhelmed by what may happen in the future. As we approach Amelie’s operation I am trying to stay mindful, knowing that we will manage it when it happens.
That’s perhaps one of the valuable lessons of trauma, it can break you or it can make you stronger: we have a choice. And even if there are times that you feel broken, it doesn’t mean you will feel like that the next day. It’s through experiences like this that I have truly learnt the meaning of the cliches we grow up hearing: ‘what doesn’t kill you will make you stronger’. It’s true.
During the birth trauma and the ups and downs of the medical traumas since, my girls have kept surviving. In doing so, I keep learning to believe. I have also acquired a magnitude of gratitude to the NHS for the life saving care we have received and the kindness, just the kindness.
During the last few months I have read about the experiences of others and how they have managed trauma. In particular, I found solidarity and comfort in reading Cathy Rentzenbrink’s: A manual for heartbreak. It is enormously refreshing when people of generous spirit are able to share with others, even if its just to say its ok to feel as you do. If I can help another person to feel not alone, then I hope I am able to return some of the kindness I have received.
Most importantly, I want to write about my babies stories so that I can illustrate to them the superhero powers they were born with. I am immensely proud of all that they have achieved in their short lives already.
This is a part of Amelie’s story. Amelie, I hope you are as proud of yourself when you read this, as I am of you when I write it.
My beautiful Amelie and your sticky up hair. I love you xxx