“One of the most difficult parts was seeing other babies being moved to the less dependency units after just a few days” – Dan's Story

In December 2024 a total of 371 babies were born at Queen Alexandra Hospital (QAH) in Portsmouth. Our daughter, often referred to by a Consultant Neonatologist as “Little Madison” was the smallest of them all weighing only 488g (1lb 1oz) the equivalent size of a mango.

Madison was born four months early at just 23 weeks and six days gestation, nine hours short of ‘viability’, due to a confirmed PPROM at 21 weeks gestation of pregnancy.

Why have we decided to share our story?

We did not personally know a single person who had been through PPROM and/or had an extremely premature baby who could relate, but we found reading other parents’ stories who chose to be vulnerable and open up about their experiences beneficial, and ultimately helped us keep positive in the long run.  

Whilst at QAH we came across Prem Dad, a blog by Carl who shared his experience with his twin sons who were born premature in 2020. As a first time expectant dad, I found Carl’s blog helpful in the early days of our journey and was inspired to write down our own experience, primarily as a coping mechanism however later to hopefully help at least one other family going through a similar experience, which was without doubt the most challenging and exhausting time of our lives both physically and mentally.

A series of unfortunate events

The pregnancy was running smoothly until unexpected abnormal events occurred in November 2024 resulting in several trips to the maternity day assessment unit in Basingstoke & North Hampshire Hospital (BNHH), but we were given the all clear on each occasion. A couple of weeks later we had our 20 week scan and all appeared normal. We had decided early on we did not want to find out our babies gender and for it to be a good ol’ surprise. Within a couple of hours of the scan another abnormal event occurred, which resulted in my wife being admitted for a night in hospital as a precaution, but was subsequently discharged. We felt something was not quite right, ultimately an expectant mum knows her body best.

A few days later my wife was readmitted at 21 weeks gestation and was diagnosed with PPROM (Premature Prelabour Rupture of Membranes). In layman terms there had been a rupture in the amniotic sac, which had resulted in a loss of amniotic fluid thus we were now classed as a high-risk pregnancy due to an increased risk of infections for both mother and baby. We were also advised when this occurs, 60% of women go into spontaneous labour within 24 hours and at 21 weeks gestation a foetus is not fully developed, therefore would not survive. According to the NHS, PPROM occurs in just 3% of pregnancies in the UK nationally.

What happened next?

We were assigned a bereavement midwife and were admitted into what’s known as the ‘Butterfly Suite’ which is allocated to parents affected by either the loss of a baby during pregnancy or expected not to live immediately after birth. It is a quiet location away from the main antenatal ward with its own bedroom, bathroom and delivery suite through a conjoining door. This enables parents to give birth, build memories and say goodbye to their baby with dignity in a private space. The gravity of the situation began to dawn on us and our smooth pregnancy journey was no more.

Whilst there we were provided some medical papers containing information including statistics associated with our situation which made for difficult reading. We also conducted our own research and read about some successful outcomes were we to reach 22 weeks gestation, however of an estimated 58,000 premature babies born in the UK, less than 1% are delivered in the 22-24 week gestation bracket with varied outcomes. To add salt to the wounds babies are not considered ‘viable’ until 24 weeks gestation, which is when the doctors are required by law to attempt resuscitation.

The next day we had another scan where we decided to find out the gender of our baby, as we were advised statistically girls tend to do better than boys. Lo and behold we were having a baby girl. Furthermore, the scan all appeared normal and indicated a healthy baby despite what had occurred. This was difficult to comprehend given we knew we were far from a standard pregnancy.

Afterwards we were asked the worst question any parent could be asked, if my wife were to go into labour whether our preference would be to provide ‘comfort care’ and only live for a short time. Alternatively, if labour did not occur and we were to reach 22 weeks gestation, we could decide to give our baby a chance of life, but had to take into consideration the increased probability of morbidity and neurological health risks. This was a difficult pill to swallow, but our decision was unanimous and we wanted to give our daughter a chance she showed us she wanted.  

A new hope

Due to our decision, we had to be transferred to a regional tertiary unit capable of providing long-term neonatal intensive care, as Basingstoke’s neonatal unit could only take on babies post 30 weeks gestation. We began counting down the days during what was the most prolonged torturous week of our lives with little to no sleep and countless thoughts but fortunately there were no signs of labour nor infections and we finally reached the end of the week where QAH in Portsmouth were asked to help. This meant when our daughter is born, she would have immediate access to their Neonatal Intensive Care Unit.

Despite not knowing what would await us, we had heard QAH NICU was one of the leading neonatal units in the country, had extensive experience and successful outcomes with extremely premature babies. Whilst the hospital was 65 miles away from home which would be logistically challenging, we were prepared to go anywhere that could help. On a separate note, I was even more happy as a Pompey FC supporter that she may get the opportunity to have Portsmouth on her birth certificate, as it could’ve been Southampton…

My wife arrived by ambulance at the antenatal ward B6. As we were classed as an out of area high-risk pregnancy, we were allocated a private side room rather than being placed on the shared ward with other expectant mothers which also meant I could stay, we just had to fend off other departments looking for the camp bed I was sleeping on next to my wife, which the midwives did a fine job of. This was a difficult period due to the fact there was no way of knowing when labour may occur, days, weeks or even months. We had to wait for any developments which was quite torturing. At this time we were living out of bags, but fortunately had very supporting family running errands for us.

Our stay in antenatal was eventful to say the least and not without a few false alarm trips back and forth to the delivery ward but the care and compassion shown by the midwives was amazing. This crucially bought us extra time for our daughter to develop by keeping her in situ and mother relaxed, ultimately giving us better odds on a successful outcome for which we will forever be grateful. 

Delivery day

After 3 weeks in maternity units my wife’s health began to deteriorate due to early indications of an infection brewing, therefore there was a consensus to intervene and induce labour at 23 weeks 6 days gestation in December 2024. My wife suddenly showed signs of delivery so the midwife pulled the emergency cord which triggered a flurry of medical teams running into our delivery suite including the neonatal retrieval team. In the back of my mind, I was conscious we were short of the viability threshold, but the neonatal team had briefed us previously they would perform a preliminary assessment known as APGAR in order to determine the best course of action for our daughter, as we would not want to cause any unnecessary suffering.

Our daughter was delivered within her amniotic sac, albeit along with the placenta detached thus compromised. The neonatal team began efforts to intubate her on the resuscitaire, given her heart rate had dropped to 60. She was assessed and had an initial APGAR score of 1 out of 10 (a term baby is normally 7-9). Fortunately, she was a fighter and was trying to breath on her own despite her lungs not being fully developed. She was stabilised before being rushed out the room to the NICU all within 7 minutes. The room which was once at full capacity began to empty and it had all seemed a blur.

Once my wife was well enough, we were able to visit our daughter in the NICU. The sheer size of her was astounding, nothing prepares you for seeing a baby that small weighing just 488g (1lb 1oz). She was laid on a silk sheet within an incubator and we were not allowed to touch her due to her being very delicate and high-risk of infection. She was also on a ventilator and had also been subject to medical procedures to enable the them to monitor her vitals, provide medication and nutrients.

Life inside QAH NICU

A week prior to our daughter’s birth we were offered a tour of the NICU as it can be quite a daunting place packed with specialist equipment and of course the infamous frequent beeping sounds. There are three areas made up of Neonatal Intensive Care Unit (Level 3), High Dependency Unit (Level 2) and Special Care Baby Unit (Level 1). Full or pre-term babies who are unwell after birth would typically reside within intensive care. In practical terms as babies progress and become less dependent on intensive care, they are moved to the lower units and in the words of the nurses are a step closer to graduation.

Throughout our daughter’s stay she was diagnosed with respiratory distress syndrome (RDS), bronchopulmonary dysplasia (BPD) / chronic lung disease (CLD), multiple collapsed lungs, osteopenia / metabolic bone disease (MBD), apnea (AOP) which caused copious apnea and bradycardia events, anaemia (AOP), stage 1 retinopathy (ROP), multiple infections, jaundice, problematic sugar levels and gastro oesophageal reflux disease (GORD). She also had endless amounts of cannula’s inserted into her tiny veins, arterial lines, long lines, countless blood gases, blood transfusions (we stopped counting when we hit double figures in the first month alone) and lumbar punctures. She even dislodged her ventilator ET tube on two occasions which resulted in reintubation. The sight of the red resuscitation trolley on standby getting unpacked isn’t a pleasant experience, we left the room at that point.

One of the most difficult parts was seeing other babies being admitted and subsequently moved to the less dependency units after just a few days stay in intensive care, whilst we knew little Madison was going to be a long term resident. There are however some good memories, such as the first time you are able to hold your baby, we had to wait over one month for this moment and it was a bit different than expected.

Another milestone was coming off the ventilator which our daughter had been on for 6 weeks and moved onto the next breathing machine BiPAP. It took two attempts in the end as during the initial attempt unbeknownst at the time she was fighting an infection, therefore became tired after 24 hours and had to be reintubated. During the second attempt she did really well and after one week on BiPAP, she was moved to CPAP for a single day prior to jumping ahead to high-flow as she was over achieving much to everyone's surprise.

Every morning a team of neonatal Doctors led by a Consultant Neonatologist would carry out their ward rounds to set the daily strategy plans for each of the babies. They are without doubt geniuses, we often thought of their job as having to spin multiple plates at one time to optimise care and mitigate risks. We had to trust a stranger with the care of our daughter, but we never had reason to doubt and we knew the whole team by now. 

Christmas & New Year’s Eve

Tis’ the season to be jolly, but it was clearly going to be a bit different this year as we entered our seventh week in hospital. Madison decided to open her eyes for the first time on Christmas Eve. On Christmas day we arrived to find a plethora of gifts for Madison and my wife from the NICU as well as charities and also parents who had been in our position the previous Christmas. Madison even had a visit from Hampshire Fire Service, albeit I think my wife was more excited by this.

Whilst we were not at home enjoying a few beverages with family and friends, we were still able to enjoy a Christmas meal in the hospital canteen courtesy of a charity Sophie’s Legacy. We could always make up on lost time in due course, our priority right now was our daughter. We were thankful for the neonatal nurses, after all they had given up spending time with their families to care for ours.

A week later at midnight on New Years, we shared a few bottles of Nozeco with the neonatal nurses courtesy of Madison who in her great wisdom thought it would be a nice treat for all to enjoy, whilst watching fireworks go off in the distance over Portsmouth. 

Long-term plan, logistics & support

It would be remiss of us to fail to mention the logistical impact this journey would have on us, as a round trip of 130 miles was not practical. Where were we going to stay, how long for and what about work? Unfortunately, QAH does not have a Ronald McDonald house. There are some basic parent rooms, but these were allocated to mums on a temporary short-term basis whose babies were closer to leaving the unit. In the end despite the hefty price tag, we decided the best solution for long-term was to stay in a local hotel and an Airbnb both a short walk away.

At the time of writing the UK Government did not offer any support to parents of premature babies, despite guidance and supporting evidence from the NHS that parents being present helps with their development. We did however learn of the Neonatal Care (Leave and Pay) Act which came into effect from 6th April 2025 and meant both parents of a baby in neonatal care by Law would be entitled to 12 weeks of statuary leave and pay. This was too late for us to benefit from, therefore our paternity and maternity was spent in hospital, which left us feeling like we had been robbed. I also had to begin working remotely partly from the hospital and also our accommodation, scrambling around with a laptop, but I counted myself fortunate I worked remote, as many other Dads were unable to be present.

Within the NICU there are a number of internal supporting departments separate from the rest of the hospital including physiotherapists for babies and a team of counsellors and psychologists available for parents. There is also a dedicated feeding team on hand to help mums who are expressing every three hours 24/7 as premature babies are fed via a tube and MEBM is most beneficial, therefore there was a lot of pressure on Madison’s mum to provide milk every 3 hours, which she did continuously for over 3 months.

We encountered several charities along the way including Bliss, The Smallest Things and Ickle Pickles which were all useful for educating us and also enabled us to learn about other parents experiences. Last but by no means least Sophie’s Legacy, who provide much needed support to the families and their children whilst in hospital which we benefited from. From the parent box awaiting us on our first day, to the Saturday night pizza, through to the check-in calls, it was nice to know others were looking out for us. The work all these not-for-profit charities do is incredible and never did we ever think we would be on the receiving end. 

Transfer day

In February 2025 it was clear our daughter had turned a corner and could now be considered for a transfer to our local neonatal unit back in Basingstoke which we were able to visit for a tour ahead of the move. We were relieved to get going however were also cautious given Madison had not left the intensive care room at QAH before. That said this would now mean we could live at home again whilst tending to her care. Things were looking up however it’s never that straight forward and due to an unstable night the decision had been made Madison needed to remain at QAH longer.

We were gutted to say the least, however accepted if she was not ready to be transferred so be it. However, on the plus side for Madison, new extra large drawers were installed in her bay, which meant her mum could acquire even more clothes. She had a reputation of being a fashionable neonate.

In March 2025 at 37 weeks gestation a specialist ambulance (SONeT) facilitated by Southampton and Oxford hospitals was arranged to take us on the next leg of our journey. Madison was three months old and was leaving QAH for the first time. Several staff members who had cared for our daughter throughout her stay whom we had built a good relationship with had gathered to see us off.

Life inside Basingstoke Neonatal Unit

At Basingstoke, Madison resided within high dependency for several weeks followed by special care. She was still having copious apnea and bradycardia events, most of the time she would recover herself whilst on other occasions intervention was needed but thankfully these improved over time. We also had an additional setback in form of yet another infection, but fortunately this did not materialise into something more nefarious.

One of the biggest challenges was growth and feeding. Madison had her own physiotherapist who continued to assess her posture and optimise her, a dietician to strategise her feeding plans and also a speech and language therapist to help with feeding techniques. Due to her extreme prematurity and reflux, she continued to have bradycardias whilst feeding which prolonged her stay and it was unsafe to consume large volumes of feed each time.

Our routine was a lot different, we were encouraged by the nurses to take on more of a primary care role including making up and giving medication and preparing the feeds, whereas previously there were dedicated staff at QAH who carried out these tasks. We didn’t have a clue what we were doing at first, however after some training and being signed off as competent we were able to get more involved.

We spent Mother’s Day and Easter weekend in the unit where yet again Madison was spoilt with gifts by the unit. Madison also went for her first ever Costa run in her pram whilst accompanied with an oxygen cylinder and saturation monitor attached in the hospital. 

Discharge day

In the lead up to discharge day we were able to room in with her to get used to a new routine. We also now had the additional complexity of administering her medication which is a full time job in itself alongside her normal feeds. Madison was required to be discharged with low flow oxygen support, therefore cylinders were installed in our house. We also had to get used to the fact we would now be without monitors assessing her saturations and we would be lying if we said this did not leave us a little anxious at first however on the other hand we would not have to listen to the infamous beeps anymore. Whilst we hope we’ll never have to do it, the whole family were drafted in for baby resuscitation training.

The day finally came, we had a discharge meeting and Madison graduated after 138 days in neonatal care. Whilst she will receive additional support moving forwards including her weekly nurse visits at home and regular follow-up assessments, we can now look to the future and count ourselves fortunate she defied the odds.