"The Bliss Champion was very knowledgeable and guided me in the right direction" - Aiga's story

Following ten years of secondary infertility, battling Asherman’s Syndrome, the impossible become possible - we were pregnant, our second baby was due on 3 December 2023. We were overjoyed and soon found out it was a girl. It all felt too good to be true!

My pregnancy was going very well, and we had additional scans and appointments to make sure and there were no apparent issues.

At 25 weeks pregnant we went on one last holiday as a family of three (me, my son Richard (aged ten), and my husband, Mangal), to France. I had been given the all-clear from the OB as well as my midwife, but little did we know the nine-day holiday would turn into 11 weeks in NICU!

My waters suddenly broke two days before our planned return so we went straight to the nearest hospital. We were then told to go to another private hospital 20 minutes drive away, which specialises in looking after babies born extremely prematurely.

I was admitted and our baby Alice was born three days later – she was 14 weeks early. She weighed just 830g which the next day dropped to 730g; she was tiny!

It was such a scary experience being in a foreign country, we didn’t speak or understand any French so there was a huge language barrier. However, all the hospital staff were amazing and super friendly. Thank God for Google Translate too, which got us through it!

Alice was on a rollercoaster. She was ventilated for a short period and was on CPAP oxygen support for the majority of her time in hospital. She had sepsis to begin with, but no other major issues apart from the obvious, extreme prematurity… she needed time. It was the most difficult time of our lives, seeing our baby fight for her life. You never think it would happen to you.

We knew it would be a long hospital stay so the next huge hurdle was the separation. Richard and Mangal had to return to the UK for school and work. I had never felt so alone and helpless in my life, all these thoughts were constantly running through my head. I felt guilty and responsible - what had I done to my family, why did my body fail us?! I had never prayed like I did then.

It was so hard on the entire family as we had never been apart before. It was especially difficult on my son. He was anxious and didn’t know what life looked like without his mummy by his side, and seeing his baby sister like that was a big shock. He kept asking me why she came early, and when I was coming home – but I didn’t have the answers. I felt so guilty.

As for my husband - all of a sudden there was this huge responsibility on him to have the house in order, school drop-offs and pickups etc., on top of the sense of duty to be strong for everyone when he also needed a shoulder to cry on.

Luckily my mum is always there for us - I would be so lost without her. We also have some very close friends who are practically family - everyone came together to help get us through it.

During this time, I was staying at a friend's place in Paris. They encouraged me to stay as long as I needed. I can’t imagine if I had to stay in a hotel for 11 weeks! I had home-cooked meals and a fridge where to store my breast milk, and all the essentials - it was truly my home away from home.

We took one day at a time. Video calls kept us going and the hospital assigned a psychologist, Anne, to care for us. She helped me cry, accept the situation, be brave, and gave me and my family many coping tools despite the language barrier! We are very grateful to her and all the nurses and doctors in Antoine-Béclère Hospital, Paris.

They saved our baby as well as our family. We grew stronger through this difficult time because of the support around us, and we didn’t break!

The nurses and doctors were exceptional. They truly cared about us all, went above and beyond to help, sacrificed their time sat with us past their shifts sometimes, to help us through - I’ve never felt so much love and care before. They made our otherwise traumatic experience somewhat into a positive one. We felt like we were in the right place to receive the best care.

Along the way Alice took some steps back where she acquired CMV and a UTI at the same time, she needed another blood transfusion as well as a plaquette transfusion. Her need for oxygen support dramatically increased too. It was all very scary.

She had oedema (swelling caused by trapped fluid) all over her body and was visibly in pain, which was so incredibly difficult to see. I sat by her side every minute of the day. I cried, I prayed, I sang and I read. I did everything I could think of though nothing seemed to help… but she did get better, we turned the corner and were back on track eventually.

The doctor then told us that Alice would be fit to fly soon, and perhaps we should start the conversation with the insurance to get us home. It was exciting news but then it hit me - how on earth does the NICU operate in the UK?! We would be in a new hospital with new doctors and nurses. It filled me with anxiety and fear.

This is when I contacted Bliss. I had come across Bliss when researching my maternity rights – I wish neonatal leave was in place already. I requested a video call with one of the Bliss Champions and this was arranged very quickly and at a convenient time for me.

I enjoyed the chat and found it very helpful and reassuring. Most of my questions were answered and my anxiety was a little eased. I found the Bliss Champion, Fabienne, very knowledgeable and able to guide me in the right direction, providing resource materials to read through. It was so nice to read leaflets in English and to talk to someone in the UK about what was happening and to have a listening ear from someone who understands the NICU world. Bravo to all at Bliss, such a wonderful charity!

Now the disappointment came when our insurance announced baby Alice had to weigh at least 2kg for repatriation despite doctors clearing us to fly. This is when we all went into disbelief and nothing made sense anymore, we took one step forward and two steps back. They said: “Because your baby is stable and in good care, she needs to meet our weight criteria.”

Our need to be reunited as a family as well as the need to establish a long-term healthcare plan with doctors in the UK was not taken into consideration. We were stuck in this nightmare situation not knowing how much longer it would take for us to reach their criteria. Alice was up and down after her illness and was actually losing weight due to all the oedema.

Luckily we found Lia’s Wings, the only aeroplane ambulance charity in the UK helping babies and children to receive care closer to home (with no weight criteria).

I wish I’d found them sooner as they were my loudest cheerleaders, advocating for Alice and bringing us home.

Dr Lee from Lia’s Wings spoke to me about Alice after seeing her medical reports and to doctors in France and in the UK and answered all my questions. I felt like I was dreaming, and thought, is this nightmare really going to end soon?

They secured a bed for Alice in the UK and also arranged a letter to the embassy, explaining the oxygen cannulas on Alice for her emergency travel documents which was so important. The list goes on and on and on with everything Lia’s Wings team did for us.

Then we flew – Alice, at 11 weeks old, took her first flight and after a nine-day stay in Basildon Hospital we were discharged and made it home for Christmas! It was a happy ending to our eventful arrival.

To other parents - don’t hesitate to reach out to these amazing charities, they can truly help, understand and care so much for us all!

Looking back, it’s very clear we had strong support around us, but it didn’t feel like that at the time. It can be such a lonely and dark journey so I always say - accept and ask for help because it is available.

I’m usually a shy and reserved individual myself and normally would just get on with it myself, whatever life throws at me. I’m so glad I stepped out of my comfort zone and asked for help because suddenly I was no longer alone. Bliss and Lia’s Wings had my back. There are not enough words to express my gratitude.