Akira and Samara’s Story

Trigger Warning – this story features Butterfly Twins (a twin whose twin has sadly died)

Gestation: 24 Weeks + 4 Days
On Unit: 24/11/2023 – 28/04/2024

Akira and Samara’s Mam, Rachel kindly shares her daughter’s story with us.

‘After a very difficult pregnancy spending two months in hospital before prior to birth, our beautiful identical twin girls were born at 24 weeks and 4 days via emergency C-section. Our eldest daughter Akira’s water broke at 18 weeks. Our beautiful baby girl Akira was born an Angel weighing 565g. She fought so hard to be here physically living on earth. We are immensely proud of her. Her strength and determination allowed myself and her little sister Samara the chance to live. Her little sister Samara was born 2 minutes later and was rushed to NICU weighing 710g.

We spent 125 days in NICU. It was very difficult being the parents of butterfly twins (a twin who’s twin has sadly died). Tiny Lives and the neonatal staff provided us with many things including Louie bears, butterfly twin mini boos, a butterfly twin sign that had Akira’s name on which hung above Samara’s incubator along with Akira’s picture, it brought great comfort to us seeing Akira watching over her little sister. It made the bay feel more welcoming also.

The staff did their best to help us have time as a family and to get photos/videos of those precious moments. There were many moments that were captured, printed out for us and placed in a memory book along with digital copies. This was only possible because of Tiny lives providing the funding for vCreate. Here are some moments I’d like to share with you all.

Four hours later after giving birth to my beautiful girls. The NICU staff arranged for the girls to be christened and for us to have that special time together as a family. They took many photos of us which we dearly cherish.

My only Christmas wish that year was to have Christmas day with both girls at Samara’s bedside. Unfortunately, the girls could not visit each other due to health reasons. We were crushed but both girls’ health had to come first. But the next news was even more devastating. The chapel of rest wasn’t open on Christmas day. Not only could we not spend Christmas together as a family. We could not see or spend time on Christmas day with Akira. Our hearts were truly shattered.

But, the incredible staff so desperately wanted to make my wish come true – that I could spend time with Akira on Christmas day. A wonderful nurse granted our wish. On Christmas eve that wonderful nurse – who I consider an angel on earth – came to work early to bring Akira up to the ward, from the Chapel of rest. We decorated the quiet room with a special Christmas tree and placed all of Akira’s presents under it. We opened her presents with her. I got to hold her underneath the Christmas tree and sing “All I want for Christmas is you”, a very cherished memory I now have thanks to her kindness. We also got to spend time with Akira on Christmas Eve and Boxing Day. We have so many amazing memories because of her. More pictures and videos were taken for us and printed.

We were also supported on the day of Akira’s celebration day (funeral), and we were able to take Samara to visit Akira at the chapel of rest on that day. I got my other wish to hold both of my girls in my arms. A kind nurse came down from the ward and took pictures for us as we held both of our girls for the first and last time. Despite the nurse having done a full night shift at work she also came to Akira’s celebration day. It really touched our hearts. The kind nurse took photographs for us and supported us as we held our precious big girl physically for the last time placing her in her casket. Those pictures were also printed for us. Akira has many precious things buried with her some provided by the ward and Tiny Lives, such as crochet butterflies, her mini boo and her Louie bear. Knowing Akira has these with her really brings us joy. Akira also has a picture with all four of us with her, that a nurse took on a ward digital camera. We love that photo so much.

Samara had some amazing nurses and consultants whilst on the ward. Samara had many close calls, but the medical team worked very hard to keep her happy and stable. Tiny lives provided us with milestone cards which we took photos with Samara.

Looking back at these photos brings so many mixed emotions but one emotion that always wins is always the pure love. On the darkest days I look at those photos and I’m thankful for every second we got to spend with Akira physically. Time is the most precious thing. Not only do those memories live in my head I also get to show people my beautiful girls in the various pictures taken.

How Did Tiny Lives Impact Your Time on the Unit?

Tiny lives helped us in many other ways by delivering food to us at Crawford house, crafting supplies which we used to make things for Akira’s wake, emotional support through the peer support/psychology department. Along with other Doctors and Nurses, Tiny Lives also came to Akira’s celebration day/wake. Cake Day was something we always looked forward to on the ward. We received Welcome Packages, Mother’s Day Flowers/Cards, World Book Day Books, Christmas Cards/Gifts and Parking Passes. We have now also attended a Christmas Memorial Service and Siblings Memorial Day. These events are so important to us to have as a family, as it is another way we can honour Akira, and when Samara is old enough to understand, she can meet other children that have sadly lost their sibling(s). They can support one another and hopefully become friends.

Thank you from the bottom of our hearts to Tiny lives and ward 35 for everything you have done for us as a family.

What does your child enjoy doing? Do they have any hobbies or passions?

Akira enjoys watching over us all and is a very loved princess. Samara enjoys holding and playing with her sister’s picture. She loves reading her books, playing in the bath and cuddling her Ms Rachel Doll. Samara can’t drink, eat (fed via Ng Tube), crawl or walk yet. But is working very hard in her physio sessions. She sees many specialists, but despite this is a very happy girl. Samara is currently being weaned from her oxygen and is due to get a peg placed soon. Akira and Samara turn two in November, and we couldn’t be prouder – how time flies!’