Sienna was born at 41 weeks healthy, happy and on the 50th Centile.
Over the course of 4 weeks her weight gain started to slow down and we noticed changes in her breathing.
By 5 weeks old she was in hospital on oxygen therapy being tested for everything under the sun, from a chest infections to Cystic Fibrosis. 3 weeks in and we were still unsure as to why she was so poorly and why she was breathing almost 80 times a minute and requiring so much oxygen. She was therefore transferred to BCH and following a Lung Bronchospy, CT Scan and Lung Biopsy at week 12 of her hospital stay (aged 17 weeks old) we were told she had a very rare interstitial lung disease called Neuroendocrine Cell Hypoplasia of Infancy (NEHI).
We were told she was likely to be on oxygen for the next 3-10 years whilst her lungs develop. Sienna is massively prone to colds, flu’s and chest infections and last year we very nearly lost her when she ended up in Intensive Care on a life support machine.
My husband and I luckily both had Critical Illness protection and I am thankful every day for this policy as it meant that in our hour of need we could focus solely on our daughter and not on having to work to make the mortgage payments. Sienna’s condition meant I couldn’t work for the first 2 ½ years of her life and my previous employer was very unaccommodating to this and I therefore had to give up my very well paid job to look after her. Our Critical Illness pay out however meant that I could do this and it wasn’t even a factor of consideration as we now had the money to support us. We also and more importantly had the money to support her. Whatever she needs which isn’t readily available on the NHS, we can still offer her. We have had 2nd and 3rd opinions from Chicago and Germany and have been able to buy her the best possible oxygen cylinders in the world and know that if there is any new medication released that we have to buy her – we can at the drop of a hat. You have no idea what a relief it is to know that whatever she needs, we know we can offer her.
Whilst we are all guilty of thinking “this would never happen to me” due to the line of work I am in, I didn’t hesitate to take a Critical Illness and Life Assurance policy when we bought our home. And there will always be a part of me that naively thought I would more likely be claiming on me in my 40’s than on my daughter in her 17th week of life but it just goes to show, none of us are invincible and these policies really do offer you a lifeline!