Our son Hugo was born at St. George’s Hospital, London via emergency Caesarean section on Thursday 20th February, 2014 at 11.19am. All sounds perfectly normal. Hundreds of babies are born this way at this hospital every year.
Here are some facts about Hugo at his time of birth.
He was born 172 days into his expected 280 day gestation.
That’s 24 weeks and four days into the usual 40 week pregnancy.
He weighed 420 grams, or 14 ounces – equivalent to a tin of baked beans.
A term baby averages about 3.4 kilograms – equivalent to 7lbs 8 ounces.
Hugo was barely 12.5% of the average birth weight of a term baby.
He had a strong heartbeat and was breathing.
He was my (our) beautiful first child and son.
Why was he with us so early?
Mum had severe pre-eclampsia and HELLP Syndrome (see Mums blog for more information). If Hugo wasn’t delivered at that time Mum could have been left with serious conditions affecting her kidneys, liver and brain or even have died. As a dad experiencing every second of this I can easily say the lead-up to delivery was the most stressful and emotional time of my life.
What happens with babies born that early?
As soon as Hugo was born, a team of Neonatal doctors and nurses took charge of his care. He was quickly put into an incubator and ventilated to ensure he kept breathing.
We had been informed the first 24 hours were critical. This was especially true because a Doppler scan the day before Hugo’s birth had revealed he was growth-restricted and his size was that of a baby at 22 weeks, five days’ gestation. He was almost two weeks behind in his growth – his 20 week scan had suggested everything was normal.
My first view of Hugo was short, sweet and very fleeting as he was rushed off to the NICU.
Hugo was tiny – and I mean tiny. He was kept inside a plastic bag. I later learnt this was to protect him from infection and maintain his body temperature.
What you will feel and your role in the first couple of days.
When I arrived in the NICU for the first time I was in a state of shock.
This NICU has four incubators in a nursery. It is warm. There are lots of beeps and alarms going off from various bits of machinery. There is a lot of activity and monitoring of your child.
Anyone who has seen a medical programme or hospital drama about babies will recognise the sort of incubator Hugo was in. What was surprising was the amount of lines and machines Hugo was attached to.
Inside the incubator was a tangle (to my eyes, anyway) of cabling and tubes to keep Hugo alive. The cables feed back to a series of monitors. Some of these monitors are very noisy. Initially, the beeps and alarms will panic you.
Lots of nurses and doctors work very, very hard in the unit looking after your baby’s welfare. They are very calm – but you are not.
In fact, you are adrenalin fuelled, confused, dazed, happy, scared, tense, frightened, fearful, anxious and completely and utterly lost. You know your baby is alive but you cannot help but think “for how long?”
The medical staff can read what is clearly etched on your face, see the nervousness in your movements and feel the raw emotions you are experiencing. They work to calm you down – it’s not the first time they’ve seen this.
Hugo’s first two nurses were both very young (compared to me) and their calm and professional approach helped me feel slightly at ease. They explained everything that had happened during delivery and updated me on his status throughout his first two days.
Dad’s possible role
Initially, as mum was recovering in adult ICU I was the only person who could see our baby. I was the parent and protector a weird experience for a father to a newborn. Mum had been carrying him, feeding, protecting and nurturing him. She alone felt his early movements, the kicks and punches. I wasn’t expecting to see him until June! And even then we were expecting to experience being parents together.
My immediate role was one of obtaining information on Hugo’s status and relaying it back to mum. Mum was recovering from the effects of a general anaesthetic and we were still unsure what the HELLP Syndrome was doing to her. A lot of the terminology was alien and complex (and I’m a bright person). Thankfully, his nurse explained more clearly what was happening.
Early communications with consultants
Early on, you will have a serious discussion with the consultant in charge. They will tell you that your baby’s survival is initially measured “hour by hour”. This panicked me. After getting through the fear that I might lose Hugo and Mum during delivery and seeing both survive, I was dragged straight back into uncertainty.
I wasn’t sure how much I should tell Mum. I will be honest and say that I tried to be a little circumspect about what I told her in the first couple of days. She was very poorly herself and I didn’t want to overly worry her. This is your choice – there is no right or wrong answer.
Use the internet judiciously to get information about what may be happening with your baby. Other people’s experiences may be similar to yours, but they will not be exactly the same. Also if your partner or baby has a rare condition, as in mum’s case with HELLP Syndrome, there may be limited information available. You can spend hours online when really you should be spending that time with your baby.
The first week
After the shock of what has happened to your family sinks in a little you will begin to lose what can only be described as tunnel vision. You will look around more and take in your surroundings.
It is important for you, your partner and baby that you try and start to become organised.
You will start to develop a routine
We were completely displaced from our normal home life. To travel to the hospital from home every day would have meant a four hour round-trip commute. Mum remained in a recovery ward and Hugo in NICU sothere was no way I could go home.
Work wasn’t a big problem, because I’m self-employed and Mum’s maternity leave started the minute Hugo was born.
Luckily, the Ronald MacDonald charity has a dedicated house on site at St. George’s Hospital. It is exclusively for the use of parents of sick children. First Touch, the charity connected to the Neonatal Department made sure I had accommodation there for as long as Hugo was in the hospital.
This allowed me to establish a daily routine that started at 7am and involved walking back and forth between the NICU, checking on Hugo’s progress and Mum’s inpatient room, seeing her and taking her to see Hugo, while trying to make sure she has rest time, getting her nutritious food to eat because the ward food was abysmal, helping her express milk, and trying to fit in some time for me to eat, too. The day would end at around 11pm with my clothes dumped in the same place on the floor every night in case they were needed, and a fitful night’s sleep in case the phone rang.
The routine can be complicated by not being allowed in the nursery while doctors’ rounds or nurses’ shift handover is taking place.
This, or a variant on this will become your life for the entire time your baby is in the unit. You are able to go to the parents’ room in the unit to grab a drink, some food or take a breather. The room is an important refuge at times.
In the first week, Hugo had a series of scans on his brain, stomach and lungs. The medical team are constantly looking for anything that might be amiss. They are on top of everything that could happen, with the aim of preventing something occurring rather than having to react and treat because it was missed. The scans will continue throughout your babies stay in the unit.
Washing your hands
Every time you enter the unit you have to wash your hands thoroughly with soap and water. On top of that, every time you put your hands into your baby’s incubator you will need to apply alcohol hand gel. You will then need to gel again each time you leave the unit. This stops germs getting in and out of NICU. You may wash your hands more than 20 times per day – no kidding!
Your hands will start to hurt and you will need moisturiser – yes, men too!
Sharing the firsts
Because I saw Hugo first, I decided that Mum should be first to touch Hugo. The whole process of parenthood is about sharing the experiences. Hugo’s first touch happened during his first week. The nurse looking after him showed us how to do a containment hold. The sheer exhilaration on mum’s face was incredible!
Second week and beyond
You will become more used to spending time in the unit and learn more about what treatment is being given to your baby.
Hugo at times was attached/connected to a Probe – to measure his heartbeat; a blood pressure cuff; a cannula line through the umbilical cord for medication; ventilator tube down his throat; a naso-gastric tube to feed him through his nose; and cannula would later be inserted in one of his arms to replace the line through the umbilical cord.
The doctors or nurses will explain what the readings on the machinery mean. You will quickly recognise your child’s heartbeat (higher than an adult’s); blood pressure (lower than an adult’s); the oxygen saturation levels (this only applies to a baby on a ventilator); the oxygen needs, air pressure levels; the amount of TPN being given, the amount, volume and duration of blood transfusions and drug flow e.g. morphine.
NOTE – you will be told to ignore the readings. In reality, this is nearly impossible. It’s your child in front of you. You want and need to know what is going on, so why not look at the displays? I couldn’t ignore them at all – but I am into numbers.
You will get used to the alarms on your baby’s monitors going off, but you will never like the sound. They tend to be triggered a lot, but not always for bad reasons. Hugo’s oxygen saturation levels would go up and down during the day. The upper parameter was set at 94% and the lower at 88% – the alarm once each level is reached sounds the same, even though reaching 94% is better.
Medical procedures such as blood transfusions become common practice for a neonatal baby! The younger the baby the less able they are to produce their own red blood cells. Additionally, to monitor the baby’s health small blood samples will be taken regularly. This is particularly the case for a baby on a ventilator like Hugo.
Your baby’s growth
You will start to take notice of your baby’s weight – are they growing? Lots of newborn premature babies lose weight at first – this is common. This should be temporary as they are adjusting to new means of being fed.
Feeding for Hugo was initially completely through the TPN. Mum was given help to start expressing straight away. All the drugs she was on were cross-checked to make sure they wouldn’t cause harm to Hugo, as trace amounts pass through to the milk.
Your baby’s weeing and pooing
You will be surprised how much you want your baby to go to the toilet. Urine levels are measured by weighing the wet nappies. This will give an indication about your child’s kidney function. I took great delight in the first few days watching Hugo try and wee on his nurses when they changed his nappy.
A poo, though, is much more precious – it is more valuable than gold. Once your baby starts to poo it is a sign that their digestive system is working and is one less stress.
Interacting with your baby
You will start to interact with your baby more. A lot of you might have started this already. Initially, Hugo was so small and his skin was fragile cuddles were impossible, so we did comfort holds instead.
You will progress from talking and touching your child to reading and singing (mum sang nursery rhymes brilliantly). The nurses will encourage you to help with daily tasks like changing your baby’s nappy. When Hugo progressed onto being fed milk alongside his TPN the nurse got me involved in the feeding process.
We did get our cuddles when Hugo grew.
You will interact with other parents in the corridors and parents’ room. Mums will chat in the ‘expressing’ room. You will want to share your story and pick-up on their successes. You might latch onto parents whose baby has a similar story to your own. In sharing their experiences they will give you an insight into what to your baby and your own short-term future in the unit might be.
Hugo developed chronic lung disease when he was two weeks old. It wasn’t until Hugo was four weeks old that we met another set of parents whose child (similar gestation and weight at birth) had the same condition to the same severity as Hugo. Their insight helped us understand what Hugo was going through and how we as parents could cope.
It is much, much harder to talk to parents that have a baby who is struggling. You not only want your child to survive, you want all of the babies to survive and become healthy little people. You will develop a sense of camaraderie and empathy with and for the other parents. “It’s not fair that someone so small has to suffer” is a phrase that you will hear over and over. To face up to the prospect of any baby in the unit having long-term health implications or worse is difficult to deal with. What do you say when you know deep down this is something you might have to face yourself in 10 minutes, three hours, two days, a week, a month or six months’ time?
Get to know the nurses, doctors and consultants
These are the people who are caring for your baby. They will have seen what is happening before lots of times. They can deliver information and updates in different ways. Some have cheerful dispositions so even in telling you some bad news they can sound upbeat. Others are dour by nature and this can put a bad spin on good news.
At times you may be called into a ‘quiet room’ by a consultant or doctor. This is generally a sign that you’re in for a serious conversation. During this conversation you will be given the worst-case scenario. It is up to you how you process this information.
We were informed on about day 14 or 15 that Hugo had chronic lung disease and that it was ‘serious’. At the time we didn’t really know what ‘serious’ meant and with hindsight we probably both took the gist of the conversation too lightly. We had developed “that can’t happen to my child” syndrome. A lot of the parents in the unit seem to share this outlook. We’re all stunned that we’re in the NICU in the first place. Just being there makes you think all of your ‘bad luck’ has been used up – surely nothing else can go wrong?
The nursing team in particular are brilliant. If you spent as much time in the unit as I did you will get to know the nurses really well. They will talk to you, listen to you and support you. They possess incredible ability and the skill to invariably say the right thing when it is most needed. I thank them for that!
Thankfully, Mum was discharged from hospital on day 15. Whilst she is still recovering from the effects of HELLP Syndrome some nine weeks later, the fact we could be together all the time and focus almost purely on Hugo was reassuring. It also took a little bit of the pressure off me to be doing all of the ‘running around’.
Eating, drinking and resting
From my experience it wasn’t until the second week that I started to find time to eat regular meals and drink properly. There simply wasn’t time before this. The fact you run on adrenalin for the first week means you can get away with it to an extent, but the lack of nutrition and energy will catch up with you.
The same applies for rest. If you push this too much you run the risk of getting sick. If you fall ill you will not be allowed to go into the NICU to spend time with your baby. Plus, you’ll need the reserves for days that may not be so good.
Good days, bad days, excellent days and terrible ones
Your baby will have all sorts of days in the unit. These will range from excellent to terrible. Not much changes on many days – these are actually good days because they are calm emotionally. You might get bad moments during a particular day, but these can change very quickly – the reverse is also true. Hugo would desaturate if he wanted his nappy changed or wanted feeding. So you panic initially as his alarms start to ring but once changed or fed they return to normal. You will get used to this as your baby develops.
The bad days are tough. They are physically and emotionally draining for parents.You may not get time to eat properly, you won’t get time to rest or relax and you may be worried to the point of feeling sick. It is these days where you will need help from the medical team and your family and friends. Hopefully, the bad days will be few and your baby will recover quickly. Sometimes the adage “two steps forward two steps back” really comes true – in fact some days it is more like five steps back!
We experienced one of the terrible days. In fact it became the worst day of our lives.
Hugo’s chronic lung disease worsened between day 14 and day 28. He was given a last chance dose of steroids to try and get his lungs working. These started on his 29th day. His lung function did appear to improve for the next four days, but as the dosage dropped his breathing worsened, his saturations declined, his oxygen levels increased and his drug needs went up.
By day 35, his health was worse than on the day the steroid treatment started. We were informed the consultant team’s unanimous decision was that Hugo would never develop healthy lungs. The recommendation was to stop intensive care as it was cruel to Hugo and continuing would give us false hope for his future. Needless to say this was a truly crushing day for our little family.
We took the advice of the medical team and Hugo passed away peacefully on Thursday 27th March 2014, aged 35 days.
I will write more about Hugo’s final day in future blogs.