Our daughter is an 11 year old firecracker, (no idea where she gets it from), opinionated, assertive, confident and sassy (nope, still no idea). But her life didn’t start out that way at all. Far from it.
She spent the first week of her life in the Special Care Baby Unit of Bristol Children’s Hospital (SCBU) fighting for her life.
And, for the first time in my life, I did a diary of our time in SCBU, selfishly to document what happened, just in case.
This is our personal story which has helped shape not only me into the person I am today but it helped mould and shape the relationship between Tristan and I and made us so much stronger as a unit. It also provides a very unique insight into the care and dedication that all staff in SCBU units around the world have for their patients and relatives and what it is like to experience such a Unit.
Mia was born in Bristol Children’s Hospital, at 6.50am on 10th March 2004 and we transferred back to Weston-super-Mare hospital that afternoon. I used to work in the Training Department of the hospital for many years so wanted to be with people I knew.
My diary starts at 5am the following morning in Weston Hospital:
At 5am I woke up “with that feeling that something was wrong”. I wandered out to the midwife station to find Mia lying naked in her cot apart from her nappy and the Midwife on the phone to the special care baby unit in St Michael’s Hospital Bristol.
I overheard the midwife say that Mia was “recessing” when she breathed (which means her chest was going in an exceptional amount), and that she was also having extreme difficulty breathing and the snufflyness that she had had since birth appeared to be much worse.
The midwife explained that Mia was so poorly she may have to be transferred back up to Bristol, but that the Bristol SCBU unit were deciding whether to send a specialist crash team down to retrieve her from Weston or whether we would have to transfer back up by ambulance with a midwife escort. I was told to pack my stuff. At 5.15am I text Tristan.
Bristol SCBU decided that Mia’s condition was too bad to wait for the crash team to arrive from Bristol so we were to go by ambulance immediately back to Bristol with a midwife escort. This meant that the Weston Ward had to lose one midwife who travelled with Mia for the journey.
Still in my PJs, within 5 minutes I was climbing into an ambulance with my bags and daughter. I wasn’t allowed to hold or touch her, and endured the longest journey I’ve ever undertaken silently crying. Despite the midwife trying to calm my nerves, I couldn’t stop.
I briefly spoke to Tristan and updated him and whilst on the phone saw the blue lights of our ambulance being reflected off traffic signs. Until then, I had thought it was a normal patient transport, but feeling the speed and seeing the blue lights brought home just how desperate our situation was. Sam was still asleep so I said to Tristan that as soon as I had any news I’d update them.
We arrived in Bristol and Mia was taken straight to SCBU. The ambulance man, however, took me back up to the ward I had left only hours before. I was placed in a bay but was told I’d be moved to a side ward later. The ambulanceman then took me down to the SCBU unit to see Mia.
Mia was at the back, with four people around her, in a ventilator bubble. A nurse looked up, saw me, and got me a chair and I sat down next to her “bubble” right against the wall and watched her struggle to breathe.
She looked so fragile. I couldn’t stop the silent tears. Monitors were strapped to her everywhere and a cannular was in her hand connected to a bag of fluid.
I sat there for an eternity in the background whilst doctors and nurses came and looked at Mia and studied stats. All focussed on our little angel.
She was booked for an emergency chest X-Ray to confirm that all her organs were there and working properly.
It took me about an hour, sat in silence, before I looked at the room I was in and realised to my surprise that there were 5 other babies in our high dependency ward. Every one of them was a pre term baby. Tiny pre term babies, who had focussed dedicated care plans. And then there was our little Mia. She looked gigantic in comparison. With no care plan. They didn’t know what was wrong with her or why she couldn’t breathe. She was marked nil by mouth and I sat there silently watching her gasp for breath.
At 8.30am I called Tristan who said he had taken Sam out of school and he was bringing him up to meet his sister for the first time. He said they would be there as soon as possible. We didn’t know how long we would have.
Due to my severely high blood pressure, I went back up to the ward to get my tablets and then cane straight back down to SCBU where I sat next to Mia, in a trancelike state, staring through the bubble listening to all the beeps and clicks and whirrs.
A nurse gave me a photo of Mia to keep, which they take when a baby first enters SCBU “so you have something to cherish in the event….” This was only explained to me later, but I was grateful for the photo nonetheless.
A nurse kindly explained that I could still touch Mia in her bubble, but that I needed to clean my hands with special fluid. I put my hand through the bubble and touched her foot. She felt so far away and more tears flowed. Our little baby was lying there helpless and I was there willing her to fight whatever it was she was fighting, to survive and come home with us.
Her chest X-Ray was clear. All organs were present and correct apart from a slightly enlarged heart. Her heartbeat also kept dropping to 90 when resting, but I was assured as she was a full term baby this was nothing to worry about.
She had been put on 4 different types of antibiotics the moment she entered SCBU to fight whatever infections she may have had. I sat and I watched the nurses take endless amounts of blood and mucous tests for which they hoped to have the results in two days’ time. All they could do now was wait and see how she responded.
Tristan arrived with Sam, who took meeting his sister for the first time SCBU very well. He had written her a card you can see it in the pictures. It said “I love you very much Mia, I want you to come home. Please get well soon I love you truely. Get well soon.”
We took Sam up to my ward for a bit of a break from SCBU, but when we got back to the unit Mia’s bubble had gone. After an initial heart stopping panic and frantic search we realised that it had been replaced by a cot. Apparently her saturation rates were stabilising, as was her breathing, she was now stable enough to no longer need the bubble. However, the nurse was keen to point out that she was far from out of the woods as they still did not know what was attempting to claim my little girl’s life.
We sat and watched the other parents in SCBU come in to see their little preterm babies. And I know it’s bad, but I was jealous. I hated them (although only briefly). You see, they, knew what was wrong with their babies, they were too early… They had to get strong enough to leave hospital. They had a plan…… We didn’t.
It is an incredibly scary thing holding your baby in your arms with so many wires and drips trying to make sure nothing gets caught, tugs or gets trapped, but it is so rewarding.
I bought her something pink from the League of Friends shop in the hospital, so that if she died she would have had something pink. Tristan and Sam also brought up a little pink teddy bear which we were allowed to put in her cot with her.
All day she fought and made small steps in the right direction, although she had now been given a nasal tube which was scary to look at. It was there to try to drain excess fluid from her lung and every so often the little pot attached to the tube would have to be emptied.
The Bristol Registrar comes to the maternity ward each week so you can register the births, so Tristan and I registered the birth of our daughter Mia Rose Hayman. We did not want to have to register her death and her birth at the same time.
That evening, after Tristan and Sam had gone home, I was told that Doctors wanted me to try breastfeeding her again to see how it went. They still hadn’t got any results back but wanted to try to tick things off the list as they went. However, a nappy change was required first, which has bright red blood in it. The Doctors came back and Mia was put back on to nil by mouth immediately before even being able to try to feed.
She was whisked away for an emergency stomach X-RAY, as they had only initially checked the organs in her chest and now needed to check that her bowels and lower organs were all present and had formed correctly and weren’t doubled up or had a hole or tear in them.
I was absolutely devasted. I rang Tristan to update him in tears again. We’d had such a good day and she had come so close but still felt so far away. The results of the X-Rays were due back at 11pm so I sat next to her watching her sleep until 11pm.
Bang on time the Doctor arrived and came over to me. He said he had “Good News and Bad News”. The good news was that all her organs in her body were present, correct in the right places and working perfectly and with the exception of her heart were all the right dimensions. The bad news was that the X-Ray hadn’t shed any light on why she was bleeding.
Our little girl had come into SCBU what seemed like a lifetime ago with a respiratory problem which had been cured. But now her symptoms had been replaced by much more scarier ones.
It’s amazing how quickly you adapt to never getting out of your pyjamas. At each day 8am and 8pm I went down to SCBU for the shift change so I could be introduced to Mia’s carer for the next twelve hours. I was becoming more involved in her care, and doing her nappy changes which I was finding very upsetting as she was still bleeding from her bowels.
She was still nil by mouth. So I was expressing with the SCBU hospital pump and donating the milk to the “milk bank” for newborn babies and pre term babies. My assets were finally being put to good use and as my milk had come in, I was the Viking queen and managed 90 ml in 15 mins!!!!
At 11am Mia’s review with the Doctors was scheduled and due to her continued bleeding lead to a stomach ultrasound being undertaken. Tristan and Sam arrived as I was being given the results that the ultrasound showed that everything was ok, but again they still did not know why she was bleeding.
We were informed that if she continued to bleed, on Monday (we were on Saturday) that they would inject radioactive dye into her body to so see if there were any leaks, tears, holes that were too small to pick up on the ultrasound and that they have to may consider surgical intervention and investigation to stop the bleeding.
I absolutely hated going up to the maternity ward for my continual blood pressure monitoring. I was surrounded by mothers and babies. At night when I went to sleep all the only sound I could hear were babies crying and mother’s comforting them. But I was sat there alone, in a room away from everyone.
On Sunday it was just me and Mia, oh and the wires, drips, beeps and other babies and nurses in SCBU. Tristan was giving Sam a day away from it all as the journey to and from Bristol by public transport is not a 5 minute thing of joy.
Mia’s last show of blood had been 8pm Saturday evening and at 8am Sunday morning she was reviewed by a Doctor who discovered a clear nappy. The Doctor said that if she had two more clear nappy changes she could start being fed either direct into her stomach by a tube or by breastfeeding. I nervously rang Tristan to give him the news.
The next two nappies were clear. So I spent the rest of the day in SCBU feeding on demand. I felt incredibly unwell and had the most horrendous headache. I was so unwell that I was escorted back to the ward for an unscheduled blood pressure check which was 170 over 110 and rising. However, there was no way on hell’s earth was I going to be kept away from our daughter. My medication was increased and I was wheeled back down to SCBU.
I was then told that if Mia had a good blood sugar result she’d be allowed up on the ward with me to save me coming down to feed her continually, as now the nurses were more concerned about me than Mia! I rang Tristan to update him and we kept our fingers crossed.
Our hopes were raised, but at the 8pm blood check the results were 2.2 far too low to be allowed to leave the unit. It was another setback that I just couldn’t handle. The nurse comforted me and said that Mia had come so far in just one day. Her antibiotics had been stopped. Wires had been removed. Her fluids were being reduced so she’d want to feed and although she still had her nasal tube to drain the fluid on her lungs away, she was doing brilliantly I was assured.
SCBU suggested that they feed her my stored milk by tube so I could get a couple of hours rest and wait for my medication to kick in. Reluctantly I agreed and was escorted back to the ward. However at 6am I was back down in the unit.
Tristan came up today and spent all day with just me and Mia which was really nice. I wasn’t up to visitors and couldn’t cope with telling anyone about how it was going without breaking down so Tristan had placed me in my own protective bubble from the world around me, fielding all the calls and it was lovely to spend time with just him. He was my rock throughout all of this, kept me sane and was there for me whatever time of the day or night it was. It must have actually been far worse for him than me, as he was 25 miles away and being given information over the phone, whilst at least I was in the same building. He had Sam to look after as well. All I know that whenever I needed to talk he was there for me, and I can never thank him enough for that.
At 7am we both met the surgical team who came to discuss Mia’s progress and possible surgery. They discussed her respiratory problem which had cleared up, followed by her mysterious bleeding from the bowels which also cleared equally as mysteriously. They then discussed their new concern which was her blood sugar levels.
Mia was becoming a feature in SCBU and they nicknamed her “Mystery Mia the girl who doesn’t want to leave” as every time she was so close to leaving she had another setback. We smiled sweetly at the sentiment but were mortified that she’d been there so long she’d been given a nickname.
At the surgical review meeting they did give us some good news that they were signing her off as “no surgical intervention required” and as soon as her blood sugar stabilised then she would be able to come to the ward with me.
Our day was spent watching Mia’s heel get pricked for blood sugar tests until it looked like a swollen pin cushion.
After two reasonable blood sugar tests later her nasal tube was removed, but, they kept her cannular in just in case she relapsed again. All other wires, drips and tubes had been removed and she almost looked normal.
All the other babies in the High Dependency Unit where we were, were so small and tiny. And whenever they had a transfer into our room, they asked the duty nurse who was the wellest baby that could be transferred to the lower dependency unit next door. Every time they came in we silently willed them to pick Mia, as it would mean we were one step closer to normal, but they never picked us.
At 3pm Mia’s blood sugar was 3.3! Her nurse called the Doctor who asked me to put her on 2 hourly feeds which would help the jaundice she was developing. He said if she had 3 good blood sugars she may be allowed up on the ward.
Tristan had gone home to be with Sam by this point so I rang him at home upset. We’d been here before, if she does this she’ll be up on the ward… blah blah blah. Tristan quite rightly pointed out that only 3 days ago she was fighting for her life and struggling to survive and she would take as long as she needed and would leave the unit when she was good and ready and not when we wanted her too. (something borne out to this day).
When I went to feed her at testing she had a blood sugar level of 3.6, so I made sure she had a really good long feed. 2 hours later, she had another good blood test of 3.4.
I was so excited I could hardly contain myself. So close, but so far and we’d been here before. Once earlier in the day and once the day before. The ward were getting itchy with me being up there and were suggesting that I transfer to the SCBU family rooms, but that meant that my own personal care would end there. However, as I needed to be monitored myself they had no option but to keep me on the ward much to their annoyance.
The next feed came and went and the blood sugar was 3.2, the pass level was 2.5, I was ecstatic. However, the Paediatrician, because of Mia’s history wanted to do one more feed and blood sugar for luck! This was scheduled for 1am!!!
I was mentally and physically exhausted, but at 1230am I went down to SCBU and was told that she had a blood sugar of 2.9 (lower than expected). I waited to be told that in her case she would have to stay on the unit for one more test, but was amazed to be told yes, due to my increasing blood pressure she had been cleared to leave SCBU!!!! However, she had not been cleared to leave the hospital, and had to remain in the ward for 24 hours but would have to come down to SCBU for regular checks.
She was hungry so the nurse suggested that I feed her in SCBU for the last time. But “Mystery Mia” did her usual trick of not wanting to leave SCBU and fed for 60 minutes straight!
at 2.49 am on 16th March, I was helped on to the ward proudly pushing OUR baby. She was finally mine at last. I could now be a real mum, and not be looked at strangely or with pity by the other mothers on the ward.
Our last day in the hospital was spent back and forth to SCBU for pre release checks and tests, all of which for the first time since she had returned to Bristol she passed with flying colours and we were finally allowed to bring her home.
In SCBU Mia lost 10 ozs in weight but gained 3 oz in one day before she left hospital on Day 7 17th March 2004.
If you ever, ever, ever,find yourself in a Special Care Baby Unit, you will be amazed by the love and dedication of the staff. The professionalism of the handovers and how they let you get involved in your baby’s care. Everything that happens around you but involves you. You may not realise it in your trancelike state but you are being cared for as much as your baby.
Luckily due to my ill health I was on the ward a couple of floors above so could pop down whenever I wanted to and take part in nappy changes, feeds or just have a sneaky cuddle. The staff will encourage you to get involved with your baby. In SCBU they don’t guess what’s wrong, they tell you the truth if they don’t know the cause but they also explain gently and carefully to you what they are going to do to find out and the next step if that doesn’t work.
As a thank you to the SCBU Unit I ran the Bristol Half Marathon in September 2011, despite never having run further than for a bus in my life, to raise money for this fantastic unit and despite tearing my calf muscle at mile 9 due to severe cramps I still finished and managed to raise £357 when my target was only £150. See it here
At the time I also set up a facebook page to document my training progress from the February when I ran my first 30 seconds right through to the end of the marathon.