Cosmic

Sofia and Philippe's Story

Written by their dad, Edouardo

On 21st October 2103 our twins, Philippe and Sofia, were born 7 weeks early. They were so tiny and yet so strong that 2 weeks later we were able to go home...

After their first vaccinations on Tuesday 18th December, Philippe started breathing a little more heavily and by Thursday night he was really struggling to breathe and started coughing. On Friday morning we took Philippe to our GP, who suspected he had contracted bronchitis and advised us to immediately take him to hospital. He also told us to take Sofia for a check-up at the same time as she might have contracted a similar virus

We took them to the children’s A&E at Chelsea and Westminster (C&W) Hospital and Sofia was soon given the all-clear. But they confirmed that Philippe had bronchiolitis so he needed to be given oxygen and monitored overnight in hospital. That night my wife stayed with Philippe while I took Sofia home.

We both had the feeling that this was going to get worse, but unfortunately we could not imagine how much worse.

The day after we swapped so I could spend time with Philippe. When I got there he seemed a little more comfortable, but his condition had not improved and throughout the day he got worse. He had to be transferred from the ward to the Paediatric High Dependency Unit (PHDU) and put on a SEPA machine to control his breathing. What happened after was very quick, but to me seemed like an eternity. After a few minutes on the SEPA machine, Philippe had an apnoea (stopped breathing) and a team of doctors and nurses were around him in seconds to help him. My whole world seemed to collapse in one moment. I was advised to call my wife as Philippe had to be sedated, intubated and transferred to the closest Paediatric Intensive Care Unit (PICU). Once my wife arrived we were explained in detail what was going to happen. We were terrified, but the team at C&W were really supportive and helped by talking us through the process step by step.

Once Philippe was ready, the CATS (Children Acute Transport Service) team arrived and they told us they were going to transfer him to St Mary’s Hospital in Paddington. We went with him in the ambulance and it was heart breaking seeing this little man, who up until a few days ago was full of life, completely still in what looked like a little space shuttle. We got to St Mary’s very late at night and we were immediately offered a hotel room to rest. Being provided with a hotel room by COSMIC was a great support as we didn’t have to think about going home and could stay close to Philippe. Once Philippe was stable, we were taken to see him and the nurse in charge explained to us the care he would receive and how they were monitoring his breathing. We were advised to get some sleep at the hotel and to come back in the morning.

That was by far the worst night of our lives. Sofia was at home with her grandparents, still healthy, but we had been told at the PICU that she was likely to follow her brother as the RSV virus was very contagious. So we were in a hotel room not only fearing the worse for our little boy, but the future for our little girl too.

Over the following days the doctors and nurses at St Mary’s took amazing care of Philippe. At first he got a little worse and we were told he had contracted meningitis and needed a course of antibiotics. Just after a couple of days of treatment he started showing signs of improvement. The team at St Mary’s were also very attentive to us and they would always make time to answer our questions, give us a word of comfort or simply have a chat to distract our minds.

In the evening of 23rd December, our fears for Sofia come true. Her breathing started becoming heavier and we immediately knew we had to take her to C&W. Over the next 36 hours Sofia followed a similar pattern to her brother and she was soon intubated. It was difficult seeing our 2 babies ill and in 2 different hospitals - being 25th December we were supposed to be all together at home celebrating our first Christmas as a family. My wife and I were in pieces.

When Sofia needed to be transferred to a PICU, we were told that there was no guarantee that she would be able to move to St Mary’s with her brother as it depended on availability. We spoke to St Mary’s staff and once again they were brilliant. They did everything they could to hold a bed for Sofia to make this experience a little easier for us, and luckily that evening Sofia was transferred to St Mary’s PICU.

On 29th December, after one week in PICU, Philippe was extubated and after 3 days he was well enough to be transferred to St Mary’s paediatric ward to fully recover whilst being monitored. He was finally discharged on Saturday 5th January, exactly 2 weeks after he was transferred to PICU.

On the other hand Sofia did not seem to be reacting well to the treatment and her condition took longer to improve. Every day we were hoping to see improvements, but her condition was only slightly getting better. She had to stay intubated for 10 days before the doctors felt comfortable with extubating her on Friday 4th January. Since her brother was being discharged the following day, the doctors decided to transfer her back to the PHDU at C&W to complete her treatment as this was our local hospital. Unfortunately the transfer put a lot of strain on her and when she got there her condition had worsened. Although we did not want to admit to ourselves that something was wrong, we were both very worried seeing her almost in the same condition as she was 2 weeks earlier.

That night my wife spent the night with Sofia and I took Philippe home with me. But at 8am the following morning my wife called with the news that Sofia had stopped breathing and needed to be intubated again. I thought I was having a nightmare. When I got to hospital the team of doctors and nurses were already working on our little girl. The second intubation was difficult as it took three attempts before to complete it. My wife and I were struggling to make sense of it all, we thought we were almost at the end of this nightmare and here we were again back to square one with Sofia. The doctors and nurses at C&W and St Mary’s (where she was transferred to again) were very supportive and explained to us that a relapse is very rare, but can happen especially considering the strength of the virus. The team at St Mary’s really went the extra mile to ensure that Sofia had even better care (if this was possible) than before, and make sure that we were fully involved in any decision moving forward. They reassured us that they would not have discharged Sofia from the PICU until they were completely sure she was fully recovered. After 5 more days in PICU and 5 days in the Paediatric Ward, Sofia was finally back home with her mum, her dad and her twin brother.

The following month both Philippe and Sofia struggled to get back into the routine as they had gone through a very difficult time and were still recovering. But after a few weeks things started getting back to normal and 8 months after Sofia’s discharge, both of them have flourished into two healthy and happy toddlers. They are crawling everywhere and have even started trying to walk!

This has been a horrible experience for both my wife and I, but I can say that something good came out of it as we came in contact with wonderful people who dedicate their life to help sick children: all the doctors, nurses, physiotherapists and the COSMIC team at St Mary’s were fantastic and we will never be able to thank them enough. Also, we have decided to be actively involved in COSMIC as the support they provide to St Mary’s PICU is invaluable and we hope that our support can contribute to help other sick children and their families getting through very difficult times.

Through their work, Edouardo and his wife have been able to set up fundraisers in aid of COSMIC. Sophia and Philippe regularly write to the PICU staff.

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