Born at 23+6 weeks weighing just 488g, Dan’s baby Madison spent a total of 138 days in neonatal care - including over Christmas - before they could finally take her home.
Pregnacare is proud to support the services of Bliss, the charity for babies born premature or sick, and their families.
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 (preterm pre-labour rupture of membranes) at 21 weeks gestation of pregnancy. It was without doubt the most challenging and exhausting time of our lives both physically and mentally.
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. 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.
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.
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.
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.
After three 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, and was assessed and stabilised before being rushed out the room to the NICU all within seven 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 them to monitor her vitals, provide medication and nutrients.
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 and 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.
One of the most difficult parts was seeing other babies being admitted and subsequently moved to the lower 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.
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.
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.
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. The work all these not-for-profit charities do is incredible and never did we ever think we would be on the receiving end.
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.
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.
At Basingstoke, Madison resided within high dependency for several weeks followed by special care.
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.
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.
The trained volunteers at Bliss are on hand to help you and are there to support families whose little ones need neonatal care, no matter the reason for their stay, or how long they are there for.
Support can be given in person or remotely, via the Bliss email and virtual support services. Please get in touch at hello@bliss.org.uk for support and information via email or video call. More information is available here.
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