14-month-old Logan-Ann is a happy and content little girl with an infectious smile who loves to be held and cuddled. She has Down’s Syndrome (Trisomy 21) and a heart condition, together with respiratory and gastrointestinal problems. Logan-Ann is supported by Naomi House & Jacksplace where she receives the complex nursing care that she needs.
Logan-Ann’s mum, Emma, shares their story.
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. I know I’m biased, every mother is, but she is absolutely amazing. I love the way she comes for snuggles and will sit on the sofa next to me and snuggle herself in. She is constantly full of smiles and love.
We found out very early on in my pregnancy, at my 10-week scan, that there were concerns, but at that stage the medics weren’t sure what was wrong.
I was in a state of shock and it felt like we were in an abyss. I didn’t know whether to feel scared or to cry.
I had a number of blood tests and was told that there was a greater than 99% chance that my baby would have Down’s Syndrome, but the tests had ruled out the other possible syndromes. 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. A few weeks later at the 16-week scan, I was told that Logan-Ann also had a congenital heart condition.
It wasn’t until after she was born, that we found out that Logan-Ann also had respiratory and gastrointestinal problems which often come with the condition of Trisomy 21. She had to undergo many operations over the next few months, but when she was 5 ½ months old, just as she was about to be discharged from hospital, her health began to deteriorate. 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. As a result of this, Logan-Ann had to have surgery to try to improve the flow.
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 decided to follow this up as I knew that Logan-Ann would have a lot of care needs and I would need additional support.
When we went for our first visit to Naomi House, I was quite nervous. We were shown around the hospice and introduced to some of the team who were very reassuring and friendly, which made me feel more at ease. Logan-Ann was very clingy, but the staff were so patient and let Logan-Ann take her own time.
We’ve stayed at Naomi House a few times now and have also been to the monthly day service, which we’ve really enjoyed. On these days, 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.
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.
While I’m at Naomi House, 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.
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.
When Logan-Ann is at Naomi House she loves to do arts and crafts and play with glitter and glue, it’s her time to get messy. It’s vital that she has these experiences because it stimulates her senses and helps with the sensory needs that she has. She loves to put her hands in the paint and feel the different textures of the materials the play team get out.
There are some activities that most people could do at home, but we can’t do, because they have to be very controlled. I can’t take Logan-Ann swimming in a public pool because it’s too cold and this can affect her circulation and put her heart into shock. At Naomi House & Jacksplace I can take her into the hydrotherapy pool and know that it will be a warm and sensory time.
We try and treat every day as special and cram each one with making memories. Having the support of Naomi House means that Logan-Ann can have the care that she needs and she can do things that we aren’t able to do at home.
When we go out we have to plan ahead and decide how long we will be so that we know whether to take the feed pump and medication with us. Logan-Ann can’t regulate her own body temperature so we also have to think about how hot or cold it is going to be. As she is so vulnerable, we have to be aware of who comes into the house and make sure she doesn’t come into contact with anyone who has got a cold or cough. The slightest cold or illness could change our direction.
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. Her condition means that her veins close and that could happen at any moment. We’ve been told that she could be with us for two months or she could make it to 10 years.
To cope with the uncertainty as a mother, I have to take each day as it comes. I go to bed with Logan-Ann in a cot next to me so that I can hear her if she makes any noises in the night. She needs constant supervision so I can’t let her out of my sight and can only leave her with people that I know well and are trained to look after her.
Children’s hospices are vital and so incredibly important to children like Logan-Ann. But it’s not only about the children, they are there to support the parents too.