Blog post by Leigh Kendall
Everything went well for the first 23 weeks of my pregnancy. I was more than half way through, and so proud of my growing bump. I had assumed it was a matter of waiting for 40 weeks.
Then I started feeling unwell, but put it down to general pregnancy discomforts. At my routine 24 week community midwife appointment it was suspected I had pre-eclampsia, due to high blood pressure and high levels of protein in my urine.
I was sent to hospital, where I was diagnosed with severe pre-eclampsia and HELLP syndrome and told I was so sick I was likely to have to deliver my baby that night. My partner Martin and I were devastated, as his chances of survival at that gestation were slim.
Luckily my condition stabilised, but two days later, I was transferred by emergency ambulance to another hospital.
The next morning doctors arrived in my room en masse. My condition had worsened and I would need to deliver my baby by emergency caesarean section to prevent my organs failing. On February 20 2014 Hugo was born 16 weeks prematurely, weighing just 420 grams.
I had to wait for about 30 hours to meet him because I was recovering in intensive care. On the evening we met, Hugo’s doctors and nurses were struggling to increase his declining blood pressure – which magically restored itself the moment I arrived at his incubator. The nurse caring for Hugo said she would never forget that moment.
Hugo was a perfect little boy, and so full of character. He would get cross when he had a wet nappy, wriggle out of his arm guards, and stick out his tongue to defy the suction tube. His nurses were fond of him, nicknaming him ‘Hugo Boss’. We spent hours talking, singing, reading and gently holding Hugo in his incubator. He recognised my voice, and my talking and singing to him were able to calm him when he was distressed.
Hugo loved my breast milk – it would all be guzzled up. Our cuddles with him were amazing; he was notorious for playing up when handled, but settled happily into calm skin-to-skin cuddles with both his mummy and daddy. Hugo would trace my skin with his hand and boogie as I sang to him. He would also pull his dad’s chest hair.
He needed to be ventilated to help him breathe, but ironically the ventilator was also damaging his lungs. We were informed that Hugo had developed chronic lung disease, so he was put on to the oscillating form of ventilation, because this was gentler for the lungs. Sadly, it didn’t really help, and neither did the nitric oxide. It felt so frustrating, as everything else seemed to be going well for him.
Hugo continued to struggle. We were told his lungs were so damaged, he was unlikely ever to recover. He was on 100 per cent oxygen, and the pressures were those an adult would be on.
He was started on a course of steroids. We knew that they were his last chance, and that they are ineffective on some babies. He initially responded really well; within the first 36 hours, his oxygen and pressures dramatically reduced. We dared to hope that we would eventually be able to take our boy home. However, when the steroid dose reduced, so did its effectiveness. His oxygen needs increased again, as did his pressures.
On Thursday March 27, my world fell apart. The consultants recommended Hugo’s treatment be withdrawn. There was no chance that his lungs would ever recover. It would be cruel to keep Hugo alive, and it would be cruel for us to live in false hope.
We had a long conversation with the consultants. There was a strong temptation to wait so we could spend more time with him, and hope for a miracle. We were also aware that there was a chance that the decision could be taken out of our hands, as Hugo was very poorly.
We went into a separate room to have our final cuddles in privacy. Martin had a skin-to-skin cuddle with Hugo first. I then cuddled Hugo, singing his favourite nursery rhymes and telling him how much I loved him, that he was the best baby any mummy could have wished for, and how proud I was of him for fighting so hard. I also told him those five weeks had been the best of my life, full of joy and happiness with my special champion boy.
Hugo died peacefully in my arms. We were in shock. He had fought so hard for 35 days, and now the baby we had so wanted and loved so much was gone.
I cuddled him. It was lovely to see his face properly without his hat, naso-gastric and ventilator tubes. Then I helped change Hugo’s nappy, and wash and dress him. The little outfit was much too big for him, but he looked lovely.
News of Hugo’s death had spread, and nurses who had cared for him popped in to say farewell, and to give us hugs. It was heartening to see how much they clearly cared for Hugo.
Amidst our heartbreak and devastation, Martin and I are grateful for the opportunity to get to know and spend time with Hugo. We are also indebted to the neonatal team at St George’s. We know that Hugo was given outstanding care by the group of kind, compassionate, and committed staff. He was given every possible treatment, and chance to fight for life. He was ultimately just too small, and premature.
More than 60 people attended Hugo’s funeral. The number of people who took the time to help celebrate Hugo’s life demonstrates how deeply he touched everyone who followed his story. Hugo’s name means ‘bright in mind and spirit’, and he certainly lived up to it.
For information and support if you’ve suffered a bereavement call the Bliss helpline for support.