Elleasha’s story
I have been fighting for my life since the day I was born. I have read my neonatal notes: ‘0% chance of survival’, ‘very likely to die’, yet here I am: 33 years old – recovering from my 6th surgery in three years.
I was born with a condition called gastroschisis (intestines outside) at 36 weeks; I also aspirated meconium during delivery. My chances were slim but my parents never gave up. I was in hospital for six months and discharged with nebulisers until I was two. I grew up ‘healthy’ and it wasn’t until 2019 we realised my bowel was malrotated. I was told, ‘Until you have a pregnancy, we don’t know how your body will cope’. I also have a condition called bronchopulmonary dysplasia (chronic lung disease), which means I have 40% lung function.
My pregnancy started off smooth but from 24-25 weeks, I began experiencing a burning sensation across my scar sites. I felt as though my insides were tearing. I expressed my concerns repeatedly with my OB and was told, ‘It’s a normal part of pregnancy’ and ‘You shouldn’t have got pregnant if you didn’t want to experience pain’. I was given dihydrocodeine to take. I took this when necessary but it reduced baby’s movements, so I just tried to power through. Each appointment I saw a different consultant and some were very rude and dismissive of my concerns and my previous medical history. I knew I had placenta praevia and if my placenta did not move, I’d need a c-section. Due to my bowel malrotation, I needed a bowel specialist present during the surgery.
At 32+5 I was taken into hospital in extreme pain. Throughout that week, I was given morphine, oramorph, tramadol, dihydrocodeine and paracetamol to battle the pain. I was vomiting blood and an MRI detected that baby was lying on my bowel causing a blockage - since my bowel anatomy is abnormal, my organs did not move as they usually would throughout a pregnancy. I had a doctor tell me daily that I did not have a blockage and I just had bad heartburn – even after the MRI revealed otherwise. At 33+3 I went into labour again and the midwife said, ‘When we see blood, we know you’re dilating and we will get you to theatre’. Luckily, I did not dilate; but I did get to six contractions in 10 minutes and baby was having regular decelerations so the on-call surgeons were called in.
My son was born at 6:10am on 19/03/22, not that I knew. The midwife said, ‘Can you hear that crying? That’s your baby outside the room’. I was confused – aren’t babies supposed to cry when they’re delivered? How did they deliver mine and take him out of the room without us hearing him? My husband was called out to find out the gender and then he came in and told me. In the background I heard the surgeon say, ‘Something doesn’t smell right’ and in that moment they realised they perforated my bowel. I saw my baby for one minute and 20 seconds before he was whisked away to NICU and I was put under general anaesthetic. I then did not see him until he was two days old. I asked repeatedly but was told no. He was in NICU, I was in ITU.
On 21/03/22, after many arguments, I was allowed to see my son. See him, not touch him. That wasn’t allowed for some reason. I felt like I was being punished because he was early. That night, he needed ventilation because he was struggling with just CPAP. Luckily he only required it overnight but because he needed CPAP again after ventilation, he exceeded hospital policy and was moved two hours away. I did not go with him. I did not see him for five days. I expressed milk daily which my husband collected and delivered to our son. He returned on Mother’s Day 2022 and I was allowed to spend four days with him, before I went back to theatre for more bowel surgery and he went home with his dad and grandma. The bowel perforation caused an ileus so the blockage caused during pregnancy did not clear. I had seven sections of necrotic bowel removed. I did not see my baby for a further 12 days while I recovered in hospital and even when going home I could not be left unattended with him because I was not allowed to lift him. It took weeks until I could be left alone. I received no mental health or trauma support. I reached out to my GP at my six-week check and was told, ‘You just had a bit of trauma, you will be fine’. I had to find my own ways to cope.
Three years on, I have since had another pregnancy, which was 100% better with better outcomes. We’ve established I cannot carry to term so my second baby was planned for 35 weeks. I had one consistent obstetrician, a bowel surgeon and received perinatal support – for which I’m eternally grateful. I have also had two more bowel surgeries, but I am currently stronger than ever.
I now work across Leicester Hospital’s NICUs as a family support worker, supporting families with poorly and premature babies. I’m using my trauma and my experiences to support others.
