I arrived at my pilates class, to find the focus was on breathing. This is one of the greatest gifts of pilates I think because the breath is such a great healer, pain reliever and stress reducer. Thank goodness we do it automatically. But, when we do it with focus, it is truly amazing what benefits it can bring.
A short while later I was listening to Twin 2’s speech and language therapist tell me soberly that he is now more than one and a half years behind his peers with his language and cognition, which is half his lifetime, and that this isn’t normal for a nearly 4-year old. She advised me that he needs assessment for further support and that the Special Educational Needs Coordinator (SENCO) will need to be involved. My heart sank for many reasons, as heart-stopping memories came flooding back.
The twins’ story
My twins were born prematurely at 29 weeks (11 weeks early), with no good reason for their early arrival. The delivery room was only just ready with two incubators, two neonatal doctors, two midwives, an obstetrician and my husband in scrubs, which he was soon asked to take off as he kept being mistaken for the lead obstetrician.
Twin 1 arrived in a rush and needed resuscitating at birth. He was then transferred to an incubator and put on continuous positive airways pressure (CPAP). His health began to decline a couple of days later, but thankfully due to the expert watchful eye of neonatal nurses who spotted this change, we were called early one morning and told he likely had sepsis so had begun antibiotics straight away. He was very small and scrawny, but he survived and thrived, and since leaving the neonatal unit he really hasn’t looked back.
Twin 2, who looked strongest in the beginning soon began to develop breathing difficulties, and having been taken off CPAP and oxygen needed to go back on to oxygen and high flow pressure. I witnessed his ups and downs for weeks on end and was eventually told when he was a few weeks old that he had developed chronic lung disease (which is irreparable damage to the lungs, usually caused by ventilation at birth). He would only outgrow his breathing issues as his lungs grew as he got bigger. The damaged part would then increasingly become less of an issue.
I’d watch the monitors as his breathing rate and heart rate would drop and then continue to drop. Sometimes I’d be running around the neonatal corridors looking for the nearest doctor and nurse to come and help me stimulate him. On five occasions, we could not stimulate him to breathe and he had to be resuscitated. The worst time was when he stopped breathing for over five minutes. He went deathly grey, floppy and lifeless and I thought he was dead. I was next to his bedside but the next few minutes felt like I was watching a film in slow motion. I was helpless to help him which felt awful and all I could do was will him to live. When his little lungs started to rise and fall again and his flesh regained some colour, the joy that filled my heart was the most all-consuming I have ever felt, and then the effects of shock set in.
A group hug with those life-saving nurses and doctor and my Mum is one of the sweetest memories I have. Shortly afterwards, my son’s nurse sat down to write in his notes, and I noticed her hands were shaking violently. I knew then, it had been a very close call. This wonderful nurse not only saved his life on this occasion, but she did it twice more. After the fifth event, I couldn’t take any more and insisted that the doctors increased my son’s high flow and oxygen to stablise him, instead of persistently trying to wean him off the support. They listened thankfully, and that was the last time he needed to be resuscitated.
We had a short reprieve until Twin 2 was 10 weeks old and his health took another nose dive. This time his tiny body swelled to twice its normal size, he couldn’t feed and started vomiting green bile. In the early hours of the morning, we received a phone call from the lead consultant who asked my husband and I to come into the hospital as soon as possible. Our son needed an emergency transfer to another hospital with surgical neonatal expertise. All the arrangements had been made and they were just waiting for the ambulance.
As we arrived onto the neonatal unit, a concerned consultant we had not met before informed us that our son would need to be fully ventilated for the transfer by ambulance, so I was asked if I wanted to hold him as he was intubated. I watched as a junior doctor I didn’t much care for struggled to do the task for a long while, until one of the ambulance crew became annoyed and took over and managed the task in seconds. I was filled with absolute horror as my little survivor then struggled for the longest time to breathe against the artificial ventilation, with his eyes looking at me pleadingly. My heart banged so painfully in my chest as I witnessed all of this, and I don’t expect the memories will ever fade.
Instead of some horrendous life-threatening stomach necrosis, which the neonatal team thought he might have, our son actually had two strangulated hernias. These were resolved with an emergency repair the next morning, and I made sure it was with stitching and not mesh.
A few days later our son was transferred back to the warmth and kindness of Queen Charlotte Hospital Neonatal Unit where he was soon well enough to go home, joining his sister and brother, and we could begin life as a family of five.
Inflammation and preterm birth
I was meant to have mesh removal three months after the twins were born, but because of their early arrival and Twin 2’s ongoing ill health, I didn’t have the surgery until the boys were two and a half years old, and over this time my symptoms increased to the point where I was experiencing all over body pain, like having slept on concrete, just weeks before my first surgery.
I talked about the twins premature birth with my mesh removal consultant, who replied that it was highly likely that the chronic inflammation caused by my immune response to the mesh was a contributing factor in their early birth. Ever since hearing this, I have found this thought extremely distressing, as it means that mesh could be to blame for the months each of my sons fought to stay alive in the neonatal unit and the ill-health Twin 2 has suffered ever since. This includes his shocking number of hospital admissions with bronchiolitis (of which he had 13 admissions in just six months after being discharged form the neonatal unit), a paralysed vocal cord (potentially carnage from the ventilation he needed), dysphagia (difficulty swallowing), breathing difficulties and asthma, mild white matter brain damage because of his prematurity, and his language, speech and cognition delays. The thought that mesh is the root cause of all of this trauma still triggers painful tears every time and much anger that not only has mesh caused me life-long harm, but it is leaving a legacy with my child as well.
So to overcome the pain, tears and anger, I do a lot of focussed pilates breathing and today was no different. I left the school in shock and sat on the sofa and breathed deeply. Breathing helps me destress, it helps me manage physical pain, and it is a healer – it helps me to forgive and to let go of all my molecules of emotion. It was the scientist Dr Candice Pert, who 20 years ago coined this term and gave her book the same name. It’s a fascinating exploration of how every cell in our body communicates with each other and holds onto emotion.