Mimi's Story

Meeting Noah's Ark

Selina talks about how she found Noah’s Ark, she says: "We were in St Mary's Hospital as Mimi had respiratory distress due to her airway closing. When we were on the PICU (Pediatric Intensive Care Unit), I met one of the paediatric nurses, who had a joint role with Noah’s Ark, and she referred us to our Family Link Worker, Maria. She came to visit us at St Mary's and since then we’ve been part of the Noah’s Ark family."

Selina goes on to describe the help she’s received from Noah’s Ark: "The support has been the most important thing for me. Especially from Maria, our Family Link Worker, our Specialist Carer, Michelle, and Vikki, our Play Specialist. It’s been a really good support network."

Family Support

Mimi has had respite stays at The Ark and also regular visits, from Michelle. These visits gave Selina, who recently qualified as a nurse, time to study and spend time with her other daughter, Anaiah, aged 5. Selina says: "When I was studying, Michelle would come and bath Mimi and put her to bed or do an activity. Mimi couldn’t be left on her own so when Michelle would visit, I would literally go for a sleep if we hadn’t slept much the night before, which was a massive help."

Selina was, at one point, faced with a decision for Mimi to have an extensive operation to reconstruct her airway. Selina says: "I thought, let's just wait. If she grows up, maybe she won’t need a big operation. Maybe she'll just grow out of it - and she did."

A Huge Moment

Mimi has now had her tracheostomy removed, which was a huge moment for the family. Selina says: "I think we've been waiting for that moment for quite a long time. Every time it came up before they said she wasn’t ready. But I think we could tell that she was ready for it this time."

"Mimi's grown so much, and she was talking more. Having the tracheostomy removed has been a big life change as we don't have to walk around with machines anymore, so it has made life easier. Mimi would never have wanted a tube for life and to be honest since it's been out, she's been so happy."

"She was happy before, but now she’s even happier. It could be the fact that her voice is a lot louder now and she can hear herself laugh and can communicate more. Now, when she comes home from school, she says she wants to take her shoes off herself, whereas before, she might not have been able to get those specific words out. Her speech is much clearer now, so I think it's helped her to express herself but if it’s not coming out clearly, we can always use Makaton or an iPad."

The Future

As everything is going well with Mimi, the family will shortly be closing to Noah’s Ark. Selina talks about how bitter-sweet it will be to say goodbye: "Michelle has been amazing, I’m probably going to cry when she goes and also Maria, who has always been there when I needed someone to talk to, offering support and advice."

Things are changing for Selina too, completing the three-year training to become a fully qualified nurse, but it hasn’t always been easy. Selina explains: "It was really, really difficult. I literally used to think, how can I actually do this, and I still don’t know how I've done it to be honest. Michelle was a big help, when she would come, I was able to go and work on an essay."

Selina wants to become a Paediatric Nurse, she says: "I’d like to work with children like Mimi on the NICU (neonatal intensive care unit) specialising in ENT (Ear, Nose and Throat).  I've been through that pain, and it would have been nice to talk to someone who had been through it. I just feel like I want to give back."

As much as it’s sad to say goodbye, it’s positive that they no longer need Noah’s Ark’s support. Selina says: 

"It's been a long journey, all we know is Noah's Ark. It will feel weird but there are other children that need them now."

With thanks to Selina, Mimi and Anaiah for allowing us to share thier story.