Logan-Ann’s story: “We have to take it day by day because we don’t know how long we’ll have her for”
At her ten-week scan, doctors told mum-to-be-Emma that they had some concerns over the health of her baby. Those concerns led to tests, which told Emma that there was a greater than 99% chance her baby would have Down’s Syndrome (Trisomy 21).
“When I heard that result, it came as a huge relief. I cried tears of happiness because I knew that Down’s Syndrome had a better prognosis than the alternatives I had been told about. However, a few weeks later at the 16-week scan, I was told that Logan-Ann also had a congenital heart condition.”
And when Logan-Ann came into the world months later, Emma also found out that Logan-Ann had respiratory and gastrointestinal problems which often come with Trisomy 21. The first five-and-a-half months of Logan-Ann’s life were spent in hospital, where she underwent many operations. And just when they were about to finally be discharged and go home, Logan-Ann’s health began to decline rapidly.
“She was diagnosed with chronic heart failure and pulmonary stenosis, which is a type of heart valve disease where the valve controlling the blood flow from the heart to the lungs is narrow and so the blood flow is affected. Logan-Ann had to have surgery to try to improve the flow.”
Meeting Naomi House for the first time
“It was at this point that I was told that Logan-Ann would need palliative care and that Naomi House would be there if I wanted to use it. I knew that Logan-Ann would have a lot of care needs and I would need additional support.
“I was quite nervous for our first visit to the hospice. We were shown around and introduced to the very friendly and reassuring team, which helped me feel more at ease. The staff were so patient with Logan-Ann, who was very clingy, and let her take her own time to adapt to the new surroundings.”
Staying at Naomi House makes such a difference to me. . .it means I can actually breathe and let myself relax because I know that the staff are highly trained,
Logan-Ann's Mum, Emma
Since that first visit, Emma and Logan-Ann have stayed overnight for respite breaks, as well as attended the day service once a month.
“Even though you still have full responsibility and care of your child, the play team organise activities which allow me to have that special time with Logan-Ann without having to worry about setting up or clearing things away. I can just come in and have a nice time and chat with other families.”
Making memories to treasure forever
Because Logan-Ann’s condition mean that her veins can close up at any moment, Emma doesn’t know how long she has with her daughter.
“We have to take Logan-Ann’s health day by day as we don’t know how long we will have her for. She could be here today and then next week, she could have a massive deterioration. We try and treat every day as special and cram each one with making memories.”
When Logan-Ann is at Naomi House, she loves to do arts and crafts and play with glitter and glue. On top of the play, music and arts therapies, Emma takes Logan-Ann to Naomi House & Jacksplace’s hydrotherapy pool. As well as being a comforting and sensory-based activity for Logan-Ann, it’s an experience for Emma because she can’t take her swimming in a public pool environment with Logan-Ann’s inability to regulate her own temperature.
Support for the whole family
Children’s hospices are as vital to children like Logan-Ann as they are to parents like Emma.
“I can come to Naomi House and know that there is a warm greeting and a very relaxed and friendly atmosphere that is full of joy. I get a happy feeling when I walk through the doors and it’s nice to hear all the sounds of the children playing.
“Staying at Naomi House makes such a difference to me. For instance, it means I don’t have to get up at 5.30 in the morning to get Logan-Ann’s first feed going and sort out her medication. The care team will take care of all of this for me. I know that I can have that down time that I don’t get when I’m at home.
“It means I can actually breathe and let myself relax because I know that the staff are highly trained, so it’s not down to me to watch every little thing that Logan-Ann is doing. It helps me unwind and I go home refreshed and more settled in myself, even if it is just for one night. It’s just a pleasure to be there.
Full of smiles and full of love
“Logan-Ann is a very cheeky little girl, who will give you a coy look and then start laughing. She is very tactile and loves to touch faces and play with your hair. She loves to be held and cuddled and you couldn’t ask for a more loving child. “
If you’d like to help children like Logan-Ann and mums like Emma make the most of every moment they have together, you can donate today. Your donation will go to the UK’s 54 children’s hospices, like Naomi House & Jacksplace, who are a lifeline for seriously ill children and their families every day.
