Hugo’s Story

Hugo Christopher Dylan Parker was born at 11.19am on Thursday February 20, at St George’s Hospital, south London. He weighed just 420 grams.

Hugo showed us that size isn’t necessarily equal to fighting spirit, or determination to live.

I loved him from the moment I saw the line appear on the pregnancy test. Martin and I had been trying to conceive for more than two years. We had fallen pregnant on the first round of Clomid treatment, and couldn’t believe our luck.

The first view I got of Hugo was during a scan at seven weeks. He was a little bean, with a strongly beating heart.

Hugo’s 12 week scan

A true boy, Hugo showed his determined and cheeky character early on. He waved at us during his 12 week scan, and would barely stop wriggling long enough for the sonographer to do her observations.

We thought we might have to come back for another go at the 20 week scan, as he was stubbornly lying quite happily on his tummy, again presenting a challenge to the sonographer doing her observations. His tummy turned out to be his favourite position. Fortunately, he moved, and Martin and I were so proud to be expecting a perfect little boy. His growth and size were perfectly within the normal parameters for his gestation.

I knew I had an active baby, as I felt the first flutterings at around 16/17 weeks, which is early for a first-time mum. I loved feeling him moving around. He clearly liked his food, as he was most active after I’d eaten my dinner.

As the weeks progressed, he got bigger and stronger, and so did his kicks and punches. I remember him kicking and punching me throughout a work meeting; it was an amusing distraction to the colleagues who were giving me a bit of a hard time. It was as if he was saying “Stop being mean to my mummy!”.

Now we’d got through the 20 week scan, we started to buy adorable baby boy outfits, and plan to buy practical things like a pram. We got excited thinking about who our baby would look like, what he would be like and be interested in, and plan all the activities we would do with him, and things we would teach him.

Everything was going well. I was more than half way through my pregnancy, and so proud of my growing bump. I had assumed it was a matter of waiting for 40 weeks, and was looking forward to the further changes to my body those weeks would bring.

My routine 24 week community midwife appointment changed everything. I had been feeling unwell for a few days, and put it down to general pregnancy discomforts that would have to be endured. The midwife suspected I had pre-eclampsia, due to high blood pressure and high levels of protein in my urine.

I was sent to Bedford 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 him that night. Martin and I were devastated, as his chance of survival at that gestation were slim. I was given two steroid injections to help his lungs.

The doctors and midwives were excellent, and very kind. They did everything they could to keep my condition stable and Hugo safe.

Two days later, I was transferred to St George’s Hospital by emergency ambulance. It was the closest specialist hospital with both a bed for me, and a place in the neonatal unit for my unborn baby.

Shortly after arrival, a Doppler scan revealed problems with the placenta and that the baby was smaller than expected, by about two weeks. We were shocked, as the 20 week scan was faultless.

A further scan was arranged for a week’s time. We were slightly reassured by this as we hoped it meant he could stay inside me for a while longer to grow bigger and stronger, and therefore have the best-possible chance at surviving.

However, the next morning doctors arrived in my room en masse. They announced my condition had worsened and I would need to deliver my baby by emergency Caesarean section as soon as was possible, to prevent my organs failing. Without that, my life would be at risk and my baby would doubtless die anyway.

Hugo on the day he was born

So, Hugo came into this world on February 20, 16 weeks early (24 weeks and four days’ gestation).

Martin and I didn’t know it was possible to love anyone so much.

I had to wait for about 30 hours to meet him after he was born because I was recovering in intensive care. Martin spent the day he was born walking between the neonatal unit and my intensive care bed, giving me updates on Hugo and showing me photos on his phone. I couldn’t wait to meet my baby.

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, demonstrating his fighting spirit.

His nurses were fond of him, nicknaming him ‘Hugo Boss’ not only for his early days reclining on a silk sheet to protect his tender skin, but for demanding to get what he wanted.

We dedicated our time to talking, singing, reading and gently holding Hugo while he was in his incubator. I loved watching him boogie away as I sang to him. This helped to not only soothe him, but to build up a precious bond within our little family that we will never forget, or lose. I felt very proud that he recognised my voice, and that my talking and singing to him were able to calm him when he was distressed.

A few moments before this photo was taken, Hugo had wriggled out of his armguard and chucked it to the other side of his incubator.

Hugo was a perfect little boy. We loved admiring his exquisitely-formed finger- and toenails; praised him for his cleverness in opening his eyes to peek out at the world, and for getting cross when he had a wet nappy; wriggling out of an arm guard; using an arm guard to protect his eyes from the light; chuckling at him sticking out his tongue to defy the suction tube, and his head of dark hair.

We were so proud of Hugo when showing his courage, showing a fighting spirit that would put grown men to shame. He was determined to have things his way, whether it was sleeping in his favourite position on his tummy, waving around his ‘laser guns’, or kicking off an unwanted blanket.

Hugo loved to play with his wires.

Hugo was an active boy, and loved to wriggle. He would often grab his wires and tubes. His nurses would sometimes have to tie him into his nest to stop him wriggling around too much.

He was cheeky, and particularly enjoyed continuing to poo while I was changing his nappy. His nurses would spend a shift running around after him and turning off his alarms when he desaturated, which he did with worrying regularity.

Hugo loved my milk, and his body was growing bigger and stronger. I was proud that he tolerated my milk. He would get cross if his feed was late. All his milk would be guzzled up, making it difficult to get any aspirate to check the nasal gastric tube was in the right place.

Our cuddles with Hugo were times to treasure. Hugo was notorious for playing up when handled, but settled happily into blissful, calm, skin-to-skin cuddles with both his mummy and daddy. Hugo would trace my skin with his hand, kick me and boogie as I sang to him. He would also pull his dad’s chest hair. They were the best times, and I wanted them to last forever.

Being a long way from home, and with family and friends all over the world, we kept everyone updated about Hugo’s progress with regular posts on Facebook. Everyone loved hearing about his antics, and looked forward to hearing about what he had got up to. They rooted for him, and admired his strength, determination and fighting spirit, sending many messages of support.

Hugo’s life was full of many ups and downs. His first week was quite stable, but rounded off by needing to have a chest drain inserted because of a lung collapse. This was the first sign of his later lung trouble.

Hugo loved his milk

He was fortunate to avoid some of the problems that afflict premature babies, such as brain bleeds and digestive problems. However, he had a couple of threatened infections. The antibiotics affected his kidneys, and he suffered terrible fluid retention while his renal system struggled to cope. His poor little body was all swollen, and he looked so uncomfortable. He would then do several massive wees, which would sometimes go through his nappy and wet his nest, which understandably made him grumpy. He was on and off insulin, as his premature system learned to metabolise sugar.

A scan revealed he had a PDA (a valve on his heart was open), which we were not too worried about as it affects many premature babies.

He needed to be ventilated to help him breathe, but ironically the ventilator was also damaging his fragile lungs. His oxygen requirements increased, as did the pressures, to get the oxygen into his lungs. His liver was affected by the pressures, and could be seen as a dark shadow at the top of his abdomen. When the shadow first appeared the dreaded NEC was suspected, which led to a very anxious few hours until an ultrasound was done and a doctor confirmed those fears were unfounded.

A cuddle with Mummy

The stress really started when we had a meeting with a consultant in the quiet room. We were informed that the team were worried about Hugo, who had by then developed chronic lung disease due to his reliance on the ventilator. Hugo was unable to produce surfactant, which made his lungs stiff and difficult to expand. His lungs were so damaged, they were similar to those belonging to an 80 year old. In addition, there were developing concerns for his kidney function. We were advised that there were other treatments that could be attempted to help his lungs develop and recover.

Hugo 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 Hugo – although, of course, we were aware that the lungs presented a significant problem.

Hugo really struggled throughout the following week. He regularly desaturated, and struggled to come back up again. We were informed by another consultant that his lungs were so damaged, he was unlikely ever to recover. He was on 100% oxygen, and the pressures were those an adult would be on. Martin and I were devastated. We loved Hugo so much, and weren’t ready to lose him. I was terrified that he would pass away without me being with him.

Those days really were mental torture.

Hugo sometimes did such a big wee, it went through to his nest, which had to be changed.

On the following day, Hugo was started on a 10 day course of steroids. We were aware that these steroids were his last chance, and that they are ineffective on some babies. He would be started on a large dose for a few days, which would then be reduced as the days progressed. The ultimate aim was to reduce his pressures and oxygen requirement to a point where extubation was likely to be successful and he could be tried on the CPAP machine. His morphine was gradually reduced, because he needed to be without it by the time he was off the ventilator so he could be alert enough to make his lungs work by themselves.

We took a close interest in his blood gas tests. I hated seeing the heel pricks. Funnily enough, however, Hugo disliked the cold probe of the temperature test in his armpit more.

Hugo initially responded really well to the steroids. Within the first 36 hours, his oxygen requirements and pressures dramatically reduced. We dared to hope that the treatment might work for our boy, that his lungs would improve, he would grow bigger and stronger and that we would eventually be able to take him home.

We enjoyed our best cuddles during these days, and our bond grew ever stronger.

I desperately hoped the improvement would be sustained. I wanted Hugo’s success story to join the others in the corridor on the unit, and had already written his tale of triumph against adversity in my head. I so wanted to take Hugo to the graduates’ Christmas party. Mental plans were made to show Hugo off to all my family, friends and random strangers and bore them with the story of my amazing son.

Cuddling Daddy.

However, when the steroid dose reduced, so did its effectiveness. His oxygen needs increased again, as did his pressures. We willed the pressures to reduce  so he could perhaps demonstrate a possibility of recovery if the steroid course was extended. We hoped he could be kept on the ventilator while he grew bigger and stronger. Anything to give him a better chance of survival.

On Thursday March 27, my world fell apart. We were advised that the consultants had recommended Hugo’s treatment be withdrawn. There was no chance that his lungs would ever recover. The rest of his body might grow, but his lungs would remain as they were. They advised that it would be cruel to keep Hugo alive, and on the ventilator. It would also be cruel for us to live in false hope.

During our cuddle that day,  I could hear Hugo’s lungs. They sounded raspy and bronchial, as though he had the lungs of an old man who had spent most of his life smoking. It was heartbreaking.

We had a long conversation with the consultants about what would happen. While it was a conversation we never wanted to have, and it was a decision no parent should have to have to think about, we felt very involved in all the discussions.

Hugo

It was left to us to decide when it would happen. There was a strong temptation to wait, be selfish and keep him going 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.

Hugo himself made the decision for us later that same day. His pressures had increased again, and he was back on 100% oxygen. The morphine levels had also gone up. He was quite agitated, and was tugging at the ventilator tube.

We decided it was time, and his doctors agreed. The travel cot was prepared to take Hugo into a separate room, where we could have our final cuddles and spend time with our precious baby 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.

After a while, his colour started to fade. The consultant came to check on him, and said his signs were fading. The end had come, and his breathing tube was removed.

We were left to be alone with Hugo. He died peacefully very soon after, still in my arms. Soon after, the consultant returned and at 5.54pm confirmed there was no heartbeat.

I was devastated, and in shock. Hugo had fought so hard for 35 days, and now it was all over. The baby and little boy I had so wanted and loved so much was gone.

We were again left alone and I cuddled Hugo for a while. It was strange but lovely to see his face properly without his hat, naso-gastric tube and ventilator tube.

The nurse returned; I helped change Hugo’s nappy, and wash and dress him. The little outfit was much too big for him, but he looked lovely. He was wrapped in a blanket with two small teddies tucked in either side. My baby looked so small and perfect.

Martin and I took turns to cuddle him. I took time stroking his face and hair, trying to take it all in. We took some photos. The nurse advised we were able to spend as long we liked together in the room.

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, and were sorry his fight was over.

I was all too aware we had to leave at some point. At around 10pm we placed him in a Moses basket and returned to our room at Ronald McDonald House, where we sobbed for most of the night.

Hugo with his mummy and daddy

Amidst our heartbreak and devastation, Martin and I will be forever grateful for the opportunity to get to know and spend time with Hugo, and give him a chance at life. While we feel very unlucky that this happened to us, we know this makes us lucky in comparison to some other parents who have lost their babies.

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. Hugo 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 – not bad for a little man who lived for only 35 days. The number of people who took the time to help celebrate Hugo’s life demonstrates how deeply he touched everyone who followed his story. The messages of support and condolence reflect how much they admired his spirit.

Hugo’s name means ‘bright in mind and spirit’, and he certainly lived up to it.

Our friends and family made generous contributions to our chosen causes: St George’s neonatal charity First Touch, and Ronald McDonald House, Tooting. Hugo’s legacy will help other babies and families in need.

I also donated my left over breast milk, which Hugo enjoyed so much, to help other babies whose mothers are unable to express.

We miss him every day, but Hugo will live on in our hearts and our minds. He helped reinforce the importance of love, friendship and bonds.

Thank you for sharing the journey so far. Hugo has inspired me in many ways: to never give up, to fight for what I believe in, and to help others.

While this the end of Hugo’s journey in life, his legacy will continue through me: his very sad, but very proud, mummy.

Hugo’s grave