Each new life, no matter how brief, forever changes the world

Today I am honoured to share with you the story of a hero, a small baby boy who’s mummy is changing the world, because the one thing she wants with all her heart can never be. Hugo, the hero of today’s story, is changing the world through his mummy.

Please read and share Leigh Kendall’s story and help her to build #Hugoslegacy

My beautiful son Hugo was born when I was just 24 weeks’ pregnant.

My partner Martin and I had tried to conceive for two years, and we were excited when we discovered I was pregnant. Everything went well for the first 23 weeks, and I was so proud of my growing bump.

Then I started feeling unwell, but put it down to general pregnancy discomforts. My midwife was concerned about my symptoms and sent me to my local hospital, where I was diagnosed with severe pre-eclampsia and HELLP syndrome. The only cure is to deliver the baby – otherwise, both mother and baby will die.

I was so sick and my baby so premature I was transferred to a specialist hospital two hours away from home. Hugo was born on February 20 2014 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. 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 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 Hugo were amazing. Hugo 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. Hugo developed chronic lung disease. It felt so frustrating, as everything else seemed to be going well for Hugo.

Hugo really started 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 Hugo. It was lovely to see his face properly without his hat, naso-gastric and ventilator tubes.

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.

I have set up an organisation called Bright in Mind and Spirit in Hugo’s memory, which is focused on improving healthcare communication and support for families in a similar situation.

I work in NHS communications. While most of my experiences have been excellent, there are several incidences where issues could have been avoided and stresses reduced if there had been better communication between health professionals, and between health professionals and me. So, I would like to use both my professional and personal experience to make improvements where necessary.

Good communication costs nothing, but can create a world of difference to a patient’s experience.

My focus at the moment is on the following:
• Improve communication and information for parents whose baby is in a neonatal unit;
• Improve information and signposting for women who have suffered a traumatic end to their pregnancy;
• Improve information and signposting for parents whose baby or child has died.

The changes that are needed are often simple, but they can help make the worst times of our lives feel just a little bit easier by knowing what to expect, what to do, and who to turn to for help. The information needs to be produced in a way that is in plain language and easy to digest.

I am pleased to have contributed to some improvements already, at the hospital where Hugo was cared for. It is a small comfort to know that my special boy lives on through this work.

You can read more of Hugo’s story and support the work that Leigh is doing over on her blog. It is an emotional and inspiring read, written by a very special mummy indeed.