Patient and Family Stories

I wanted to give something back for the truly amazing care that the Paediatric Intensive Care Unit gave my daughter Phoebe when she was born.

One NYE our world came crashing down, as our 9 day old daughter Phoebe became extremely ill. Living just a stone’s throw away from Southampton Hospital we took her to be checked over and within minutes of arriving Phoebe started to struggle.

Doctors swarmed around her and when the defibrillator was bought in to the room, we knew she was in trouble. Having been rushed to PICU, the staff of skilled doctors, specialists and nurses, placed her on a life support machine whilst they looked for the medical cause.

After waiting for what seemed like a lifetime, we were told the news our newborn girl needed urgent heart surgery to save her life. On the day of the operation, having been rested for 2 days prior, we were lucky to get an overnight room opposite PICU where we spent the day with family. After 7 nail biting hours we were called through to PICU to be told the fabulous news that all had gone well.

Phoebe went on to spend a week in PICU and had a few ups and downs along the way, and a further few weeks on a high dependency ward where she continued her recovery, and we could slowly start to get to know our beautiful daughter.

Now a happy, healthy child we are forever grateful to the surgeons, doctors and nurses and the constant support of PICU who selflessly fight to save other sick children.

It was because of the care and support we received that inspired me to want to raise money for Friends of PICU – a charity who solely support the PICU. Having applied via ballot for the London Marathon, I had the fantastic opportunity to run and raise some much needed money for Friends of PICU.  I can honestly say that without PICU, my daughter and thousands of other children across the South Coast, would not be alive today.

At 19 days old our baby girl arrived at Southampton PICU via a retrieval team from Royal Berkshire Hospital. She was incredibly ill with meningitis and sepsis caused by late onset group B strep. She stayed in PICU over Christmas 2019.

We will never forget the incredible care we received as a family, from the doctors who would always spend time answering any questions we had as parents – they would always explain in simple easy terms so we could understand. The nurses would spend not only their whole shift looking after my baby girl, but they also made sure as parents we were looking after ourselves too, always reminding us to eat. I remember the first night, I didn’t want to leave her there – she was so tiny and the nurse could see I was so tired, and so she promised me if I went to bed and tried to get some rest they would ring me immediately if there were any changes. Luckily, there was no change by the morning, but I was certain as I left that night in tears if there had been, she would have let me know.

We stayed over Christmas and when we came in Christmas morning, the nurse working the night shift had made us a Christmas card addressed to mummy and daddy with painted stamped footprints on from our babe that she had made!

These are just a few examples of how the staff in the PICU went over and beyond (and I could tell you so many more too!) and we will always be so so grateful as a family for the life changing work they do.

We have a picture of Elissa with her Ellie the elephant when she was in Southampton PICU; she’s now made a full recovery, and loves her elephant, and we love seeing it as a reminder of how far she’s come.

Thanks so much for all you do supporting them!

On the 10th of August at just 16 days old George fell ill. The GP sent him straight to Southampton Children’s Hospital emergency department where an on hand PICU doctor caring for another child recognised how poorly George was.

His health deteriorated fast and he began to fight for his life.  George was taken to the Paediatric Intensive Care Unit where he was put on to a ventilator to rest his brain, and help him to breath.  A lumbar puncture revealed George has Group B Strep Meningitis.  At this point my whole world seemed to disappear in front of me.

George spent 5 days in PICU fighting the illness every step of the way and incredibly with the care and attention of the medical team and his family by his bedside, he got better and regained consciousness.  We spent a further 3 weeks in Southampton hospital recovering and gaining strength before we could be sent home.

He is recovering well, and continuing to meet his milestones.  As a family we cannot express our gratitude enough for the incredible and live saving care George was given at the PICU.

George’s mum says: Without our regional PICU there could have been a very different outcome for George, and many other families across the South who have needed the services of this amazing unit.  Friends of PICU helps by providing money to buy vital specialist medical equipment, but also gives wonderful support to parents, brothers, and sisters at a most difficult time.  The following Summer, at just one year of age, George, myself, and our family, held a fundraising event and were able to raise some money to give to the PICU for the care and support we received.  I have also volunteered at some of their charity events helping to raise money and awareness of the amazing PICU.  We have made an emotional return visit to see the nurses and doctors on PICU and the Friends of PICU and show them how well George is doing, and we hope to be able to do this annually to show our thanks.

My Son Timo was born in 2012 with Left Atrial Isomerism, Heterotaxy and polysplenia. At 12 days old he was transferred from Poole Hospital and had a Ladds procedure at Southampton Children’s Hospital. He was placed in the PICU where he spent 3 weeks receiving care that went way above and beyond the normal that we expected from the staff. Timo has continued to make amazing progress and is now a fantastic swimmer, enjoys his cycling, and of course computer games.

A few years later I entered into an Ironman 70.3 in Mallorca and my wife suggested I do it for charity. Whilst at PICU Timo had been given an ‘elephant’ and a knitted hat by Friends of PICU and the memory of this simple but immensely comforting support remained with us. So we wanted to give something back to the PICU, so they can continue to provide the best care and give the best support to other families that we received.

I contacted Friends of PICU and they assisted me in setting up a fundraising page for PICU and kindly sent a PICU T Shirt to Timo and I. I would receive emails asking how my training was going, if I needed anything, and thanking me for my fundraising. Before the event, FoPICU called to wish us all the best in Mallorca, where we managed to raise £3,500 and I managed to finish!

Friends of PICU then organised for my wife, Timo, and I to visit the PICU ward. This was amazing for Timo – he saw where he had been cared for and the amazing work the unit does. The nurses and charity made him feel relaxed and like a superstar. Whilst at the PICU a large cheque was revealed with Timo’s name and amount raised, and awe were showed a plaque on the wall with our family name. I don’t think Timo had smiled as much as he did then.

As a family we have continued to support the PICU for their life-saving work. The charity is an amazing asset and we are proud to have had further fundraising opportunities (including the London Marathon and Ride London100), fundraising presentations, and to meet the medical teams again, and have now raised over £9,000 for the support they have given to us.

When Rex was born at Frimley Park hospital he was taken to SCBU shortly after birth, he had meconium aspiration, after a couple of days we were told he was doing great and would be able to go home in a few days.  But that afternoon we were told the doctors had discovered a heart murmur and we had to go to another hospital for treatment, they called Southampton Children’s Hospital who sent the PICU ambulance team and we headed straight there!

The following day we found out about his heart condition, and spent a few days on the PICU before going to the cardiac ward (Ocean Ward).  When Rex was 8 days old he was big enough for his surgery, he returned to the PICU after his operation and we stayed in the parents rooms supplied by Friends of PICU so that we could be closer to our boy which was amazing.

When Rex was 8 months old, he had a 2nd heart operation and we once again returned to PICU for recovery after his operation.  Along with the medical care, we were provided with a DVD player and other items which helped to make Rex’s stay more comfortable.

We can never thank the doctors and nurses enough for saving our little boy’s life. The support they offered was great and of course the family room across the hall made our stay easier!

We have done many things to help raise money for the fantastic charity that supports the unit including; a few fun colour runs, family fun days in the Crimea Inn (Aldershot), Rex’s daddy Ray has completed a lot of running events culminating in running the London Marathon, and we both decided to throw ourselves out of a plane on a tandem skydive, which was one of the most amazing experiences we have ever done!

Thank you to everyone on the PICU and Friends of PICU for everything you do!

Imagine, taking your 10 day old son and his 2 year old sister for their first family outing to the farm, and just 6 hours later you are in casualty and your son is fighting for his life.

William had been irritable all day, an upset tummy & not feeding. A lump under his right ear and a worsening condition meant we took him to A&E. But by the time we got there he was unresponsive, and the resus team had to work on him to keep him alive. I just wanted him to cry as whilst he was crying, I knew he was alive.

After being stabilised and given antibiotics, he was moved to PICU where we were told the next 24 hours were crucial and there were no guarantees that he would live. My tiny baby was hooked up to machines, with wires covering him and I was too afraid to touch him in case I knocked anything. There was just enough room to be able to stroke his cheek.

We had to leave him overnight and rest in the PICU family rooms. I just prayed he would make it through the night, and the nurses wouldn’t come to tell us his condition was worsening. After 48 hours the blood tests came back, and he had late onset Group B Strep, septicaemia and a blood clot.

He spent 5 days in the PICU and a further 2 weeks in hospital. William was one of the lucky ones! The doctors and nurses in the PICU are amazing and without their dedication and care William might not be with us now, so I vowed that I would do whatever I could to help the unit.

On returning home, we decided instead of Christmas gifts to our friends and family, we would make a donation to Friends of PICU, and then once William was older, I started to think about fundraising.

We have since, arranged, a children’s bike ride around Southampton Common, a Quiz/Curry night and auction, James Bond themed ball, and I took up running for the Great South Run and with the bug from there I went on to run the London Marathon. From all of these events we have together now raised over £20,000.

I’d like to thank my family, friends and colleagues for helping and supporting me and such a worthwhile charity, and the PICU for their simply amazing care.

Our Son Oscar was admitted to PICU after spending time in Worthing Hospital with suspected Pneumonia. Having been discharged we soon realised that things were not right, and took him back ‘under warranty’, and through a Spanish consultants initiative they immediately made a call to PICU….and Oscars journey began….literally!

Michael and Derek arrived at Worthing hospital in the PICU ambulance in the middle of the night and ‘took over’ Oscars life support and was then taken by the blue lights to Southampton. Oscar was then treated in PICU for a few days and diagnosed with ADEM. Oscar was one of the longer term PICU patients at the time staying in the PICU until November, and then he spent a further 5 months in HDU before being discharged at Easter 2017.

Oscar is doing well, but like with many children following illness it is a difficult road ahead, but with that uncertainty, it is good that he is the cheekiest person in the family!

The PICU, supported by Friends of PICU, is an incredible asset to have in our region. Nobody knows if they will require the care from PICU, or how they would react or cope at such a difficult family time. However, soon after our arrival through speaking to the nurses and doctors and learning about the charity and how they support the PICU – knowing of the thoughts and care that was there from so many other past patients families through the funds donated to provide the additional equipment and help to create such a caring environment, made that time more manageable for our family.

My older daughter Izzie was selected as the FoPICU London Marathon charity runner in 2018, and I was fortunate to obtain a ballot place, so we ran and fundraised together. The memory of our time on PICU and the charity support certainly played a major part in getting us both over the London Marathon finish line!

We continue to think of the PICU and support the charity in lots of different ways, and our empathy has grown further – I am in no doubt that this is due to the incredible care given by the PICU team and the charity’s passion in support for the PICU.

Alan & Zoe, Oscar’s parents

I had never heard of the PICU before. This was the day after his wife Nikki gave birth to their second daughter, Kitty.

The midwives left Kitty, Nikki, my other daughter (who was 4 at the time), and myself all cuddling on the sofa when our delightful new addition was just a few hours old. I cannot tell you how happy I felt at that moment.

Following an unsettled first night at home, Kitty was very restless, wouldn’t feed, and quite irritable, it became apparent in the morning our baby daughter had become acutely unwell. The events that followed changed our lives forever.

We rushed Kitty to our GP and were promptly advised to go to our local hospital in Basingstoke. Kitty was in Nikki’s arms just as we got to the hospital when Kitty suffered a cardiac arrest.

In the hours that followed, Nikki and I were told that the signs were not good. We were prepared to say our good-byes! There isn’t a parent alive who wants to outlive their children or to be in this position. Yet here Nikki and I were, possibly parting with Kitty so soon after she had entered our lives.

However, later that day we were given a glimmer of hope. If Kitty could be collected by the PICU retrieval team from Southampton Hospital, Kitty could receive the specialist care so desperately needed. Kitty was soon collected by the PICU ambulance team, who kept us informed throughout the whole transfer.

At this stage it was the machines and expertise of the PICU team keeping Kitty alive. We simply did not know how much time we would have with Kitty. With 24 hour 1 to 1 care, promising signs started to emerge, and slowly over the next 5 days began recovering and was eventually taken off the ventilator. After a further week in hospital, at 2 weeks old Kitty returned home. Her future at the time was still uncertain, but she was with us all at home.

Kitty is now a bubbly, lively young girl who astounds and amazes us on a daily basis. Words cannot explain how grateful we were then and still are now to the incredible PICU team, without whose skills, care, and attention, we are sure Kitty would not be with us today.

Over the past few years my family and I have been supporting Friends of PICU through fundraising, attending many events as volunteers and I have the honour of being a current Trustee of the charity.

Darren, Kitty’s Dad

If you would like to share your family story here, please contact the charity.