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Max's story

Max's storyHannah shares the story of her son, Max, who was born with brain damage due to a lack of oxygen during his birth.

My son, Max, was born extremely unwell and we have been living with the consequences of that ever since.

I had a very ‘low risk’, uneventful pregnancy. I was induced at 42 weeks – I was sold on the benefits of natural childbirth and wanted as few interventions as possible. It took a while for labour to start, but as it got underway my husband and I were joined by a midwife from the case-loading midwifery practice that had been looking after me. My plans of giving birth in a pool were scuppered by the need for me to be connected to continuous monitoring and as I breathed gas and air through my contractions, the midwife kept an eye on the CTG printout. Labouring was okay – tough and painful but I was focussed and I breathed through each contraction as I watched the waves rise on the monitor in front of me. It was a typical labour.

Eventually I wanted to push. I was vaguely aware of discussions going on, and a new, unfamiliar midwife appeared. She introduced herself and said that my baby was distressed, needed to be born right now, and that she was going to do an immediate episiotomy. 

Max was born and immediately taken away to be resuscitated in the corner of the room. The midwives surrounded him, after a little while some doctors appeared, and still my baby made no noise. He was taken away to NICU (Neonatal Intensive Care Unit). After some time a neonatal doctor came to tell us that Max was really unwell and that the best thing was for him to be therapeutically cooled in another hospital. It was agreed I could go to visit him since I hadn’t yet seen him – my bed was wheeled into NICU where Max was lying in a small cot, covered in tubes and wires, still streaked with meconium. I saw him once more before he left for another hospital, when the transport team brought him up to me as I was coming out of theatre, where they had removed my placenta and repaired the episiotomy. I was heartbroken that I couldn’t touch him and that he would be alone on his journey to another hospital.

Max ended up being in two different hospitals for five weeks. He progressed from NICU, where he was sedated and cooled, to a HDU (High Dependency Unit) and, as the breathing assistance was removed, the medications reduced, we were transferred back to our local hospital. He got healthier, but feeding was difficult for him so he was discharged with an NG (nasogastric tube) and has had a feeding tube ever since.

When Max was two weeks old we were told that he would have cerebral palsy. The midwife had been monitoring my heartbeat, rather than Max’s, towards the end of my labour and didn’t notice he was struggling. It took longer than it should have for him to be resuscitated. Hypoxic ischaemic encephalopathy (oxygen deprivation) has caused Max to have severe cerebral palsy which means he is bright, beautiful and engaged but unable to sit, walk, eat, drink, talk or use his hands. He goes to a special needs school and uses his eyes to communicate. He loves Roald Dahl books and riding a trike. He has to be helped to do everything. He is a delight to us, but many aspects of his life are tough. I am often sad that his life is so difficult, and it didn’t need to be so.

Max’s disability is due to someone making a mistake which damaged his brain irrevocably – that has lifelong consequences for him and all of our family. We work to make Max’s life as good as it can be, and he is happy much of the time, but it is hard work and has changed everything about the way we live. I have had two more children since Max, both by elective caesarean under the care of an extremely skilled, compassionate obstetrician.

Max was a typical child until half an hour before he was born. It is heartbreakingly sad to know that babies continue to be injured in the way that Max was, and babies’ brains continue to be damaged. Something has to change.