At our 20 week scan they picked up on something very unusual. I remember being in the room for almost 3 hours with 3 different people coming in to give their opinions whilst whispering to themselves. I heard them say her heart was on her right sideā¦ something I had never heard of, straight away they told me not to worry and that it is possible. For the remainder of my pregnancy I was being seen almost weekly at King Eddys.Ā
They had diagnosed Elfesiah with Heterotaxy with asplenia & dextrocardia. They couldnāt tell us everything that was wrong with Elfy as they just didnāt know. They knew her heart was very broken, they could tell it was backwards and facing towards the right, she had two holes in both chambers of her heart, her veins pumped into different areas of her heart and she did not have a pulmonary valve. We were asked if we would like to TFMR, surgery or palliative care. Ā We chose to continue with the pregnancy and try give elfy a chance at life with surgery but 5 weeks before her due date we were called for a meeting and were told Elfy would not be compatible with surgery as it was a high chance she would pass during. It absolutely broke us as first time parents hearing this and then knowing we would not have long with her.Ā
Our next appointments included talk of her palliative care sheād now be having, meeting with her palliative care Drs and birth planning. Elfesiah was born on the 1st of August 2023, Elfy was only expected to live an hour or two after birth but she defied the odds and lived for 186 days -6 beautiful months and 1 bright day.Ā
Elfesiahs life was filled with so much love and so many smiles. She brought happiness to everyone who got the chance to met her and even people who did not get to met her. Everybody loved Elfy.Ā
Even though Elfy was not a very well little girl you would have never have thought that if you met her, she was always smiling, she did everything like a normal baby and she loved to talk back to you.Ā Elfesiah's favorite things included dancing fruit, Mickey Mouse, and The Walking Dead, which she watched with us. She enjoyed being outdoors and always smiled when taken outside, never cried when out of the house. Elfesiah loved car rides, looking out the window, playing with toys, and talking to herself. She gave her first and only giggle in her car seat whilst chatting to herself in the backseat.
When Elfy had turned 6 weeks old she went into PCH for a CT scan to see exactly what was going on with her tiny body. I didnāt leave her side, they put me in a big heavy jacket and I stood right beside her and she was so brave.Ā
They found that Elfy had a midline liver, no spleen (picked up before she was born), she had a diaphragmatic hernia with her stomach pushed through her diaphragm and some more. Even with all of these issues Elfesiah was the strongest little lady and she always made life so much more easier.Ā
On the 2nd of February 2024 Elfesiah passed away after a brave but brief battle. Just hours before she passed she was happy and smiling, we believe she was telling us she is going to be okay. We are incredibly proud of our girl. We love and miss her every single day.
Having the knowledge that Red Nose is available for support 24/7 is incredibly comforting. Attending support groups, even though we've only been to two so far, has been invaluable. I'm certain we will continue to attend and find solace in sharing Elfy's story with others who understand and can relate to our experiences. It's a reassuring feeling to connect with people on a level where we can openly talk about our feelings and find support.
Beautiful Elfie will always be remembered, we are so proud of you Mikayla xx