Saving Young Lungs - Tamlin's Story
Born prematurely at just 27 weeks, Tamlin was unable to breathe on his own. Without access to MRI screening Tamlin’s parents were left in the dark about his condition.
When Tamlin was born, he was immediately put on a ventilator. But we had no idea when he might be able to breathe on his own.
Premature babies are so vulnerable to infection, and CT scans were too dangerous for his lungs due to radiation exposure. Every single test, needle, or procedure is a risk. So the doctors told us we’d have to take a ‘suck it and see’ approach to removing the ventilator.
Taking him off the ventilator failed twice. The first time he only managed a couple of days before needing urgent intubation. The second time was a huge setback. He’d been off the ventilator for two weeks so we felt like he was improving. Suddenly things deteriorated and Tamlin stopped breathing. He had to be resuscitated in an emergency procedure. I witnessed it all. It was one of the worst moments of my life.
One of the hardest things about having a premature baby is that you become obsessed with watching the numbers. There are so many wires and probes attached to your baby. The machines beep when the baby's oxygen levels go down but you don’t know why. You’re in the dark because it’s impossible to know really what state the lungs are in. It’s a very lonely time living in the NICU (A Neonatal Intensive Care Unit).
I can’t really do justice to the feeling of knowing that there might be ways for doctors to better understand what’s going on in a baby's lungs. It would honestly make a huge difference to the journey of a premature baby on the NICU. The lack of information and constant waiting and seeing is so hard to deal with. To have a way of actually assessing the damage would’ve lifted a huge weight from our shoulders.
Even when we had left the hospital, we were still in the dark. Tamlin would cough at night. And the sounds were horrifying. It sounded like he was choking and so many times I had to get up to watch him sleep because I was so worried.
We had no clue whether Tamlin would need oxygen for 6 weeks, 6 months or 3 years. We were just on the treatment plan and had to wait and see. At each follow up appointment they’d listen to his breathing but there was no clear test that actually told us how healthy his lungs were. It was just guess work. I kept thinking: he’s off oxygen, but what if there’s still a problem in his lungs?
I’m so glad to hear that this research is happening now. Knowing how difficult it is to have a premature baby and the journey parents go through, I wouldn't wish it on anyone and anything that would make it even a tiny bit easier should definitely be explored.
This new MRI scanning technology will genuinely make such a difference to families. I wish I could’ve experienced it, it would have made my life far better. But I’m glad to know that improvements are coming for others.
Zoë
Mum to Tamlin
Researchers at the Insigneo Institute at the University of Sheffield, have discovered a way to see inside children’s lungs like never before. By inhaling a safe gas, called xenon, and using existing MRI scanners, doctors can now see how lung disease is affecting a child in real-time and provide clear answers to terrified parents.
The lack of this technology left Tamlin’s parents, worrying that he was still unwell, even after leaving the hospital.
We’re fundraising for a new Research Fellow to test how this MRI technology can be used to help children with a range of lung conditions, and get it into the hands of doctors throughout the UK.
For the parents of children who are fighting for every breath, the unknown extent of the problem is their biggest cause of fear. This life altering technology is vital to ensure that no parent is left in the dark.