Matilda’s story


Supporter James Reilly took part in the Brighton Half Marathon this year (February 2016) for Rockinghorse, having experienced the amazing work of the Special Care Baby Unit (SCBU) and Trevor Mann Baby Unit (TMBU).

He raised just over £1,750 to help support sick babies, like his daughter Matilda. Here, in his own words, James tells her story… 

“Our daughter Matilda arrived on 11 September 2015, nearly eight weeks early. It was very sudden which meant that my wife Jenni was not able to get the full dose of steroid treatment to make sure Matilda’s lungs were fully matured before she gave birth – so Matilda had a pretty hard first six weeks in this world!

Immediately after she was born, Matilda was treated by the doctors and nurses at the Special Care Baby Unit in Haywards Heath, to make sure she was getting enough oxygen to stabilise her before being transferred to The Trevor Mann Baby Unit in Brighton by the Neonatal Transport Team.

Once at the TMBU, Matilda spent her first three to four days in Neonatal Intensive Care, having been classed as having Respiratory Distress Syndrome. She needed a ventilator and then an OptiFlow machine, both of which helped her little lungs inflate fully and allowed her to get the right amount of oxygen. She also needed phototherapy to treat some Jaundice, and a feeding tube so she could grow.

Later in the week she was downgraded and moved to the High Dependency Ward at The Royal Alexandra Children’s Hospital. It was there that she had her first proper breaths in normal air and we began to think about taking her back to SCBU in Haywards Heath and hoped, soon, to take her home.

Unfortunately, after settling in at the SCBU, Matilda caught a virus and had to go back on OptiFlow breathing support. She then spent a further seven weeks at SCBU as the virus really knocked her little lungs which were already pretty weak. Thankfully, a couple of months later, Matilda was given the all clear and is no longer on the oxygen at all. 

I know that must seem far more detail than necessary, but I just wanted to mention all the major events in her life so far and the support she received are because of the ventilator, the transport incubator, the phototherapy equipment, the drugs, the OptiFlow, the heated cot, the monitoring equipment, the staff, and all the other bits all cost money. Lots of it and, yes the NHS provide some of this, but lots of it is also provided by charities such as Rockinghorse. 

The whole team of doctors, nurses and support staff that work in the Alex, SCBU and TMBU do as close a thing to “God’s Work” as I have ever seen and are supported in doing this by this fantastic charity.

The equipment that they provide definitely saved Matilda’s life and made her, and us as parents, more comfortable and so I ask, if you can, please take part in the Brighton Half Marathon and give something back for what they have done for me, Jenni and our beautiful, strong, amazing little girl Matilda. Thank You.”

If you would like to share your own story with us, we would love to hear from you. Call us on 01273 330044 or email