At the age of 23, Shelby Woods faces every parent’s worst nightmare – a sick child. However, for Shelby, this nightmare is greater because both of her children, Sienna and Noah, were diagnosed with cystic fibrosis, an incurable genetic disease that had them going in and out of the hospital.
Shelby’s daughter, Sienna, was born on May 26th, 2016. She was a month and a half premature. At the time, it was thought that Sienna was suffering from meconium ileus, a bowel obstruction that is brought about when the meconium of a newborn’s intestine is thicker and stickier than it should be. This, in turn, creates a blockage in a portion of the small intestine, known as ileum.
“At the time, this was a very scary and stressful situation as Sienna was in Ormskirk Neonatal unit, unaware of the life changing condition she was about to be diagnosed with. After 72 hours, Sienna was still struggling and had to be transferred to Alder Hey for further investigation. On the fifth day Sienna had her newborn screening, commonly known as the heel-prick test. This is where a sample of blood is taken as part of the normal Guthrie test carried out on all babies. A few days later, I was taken to a private room and asked to have a member of my family with me, not knowing why I was being asked these questions and taken away from my unwell, new born baby. As I sat in the room, with five specialists staring back at me, all I could do was think the worst. The specialist nurse spoke calmly and informed me that Sienna’s condition was due to the fact she had now been diagnosed with Cystic Fibrosis. This was a massive shock to my family and I, as nobody had any idea what CF was or that we even carried the faulty gene,” said Shelby.
Learning how to administer treatment
After receiving the shocking news about Sienna’s diagnosis, Shelby had to learn how to give her daughter physiotherapy and medication to help maintain her health and well-being. During the first year of her life, Sienna was administered to the hospital on multiple occasions. She had to receive intravenous antibiotics and even a bronchoscopy on one particular occasion.
In June 2017, Shelby gave birth to her second child, Noah. “Throughout my pregnancy I wholeheartedly believed despite the 1 in 4 chance that Noah would be born healthy. During the birth, as a precaution, cord blood was taken so we could get a quicker diagnosis. Everything was completely different when compared to Sienna. Noah was born at 37 weeks and luckily was able to come home straight away. Once at home Noah didn’t show any signs of having CF, apart from losing a significant amount of weight which I believed was due to him being breastfed. On the 10th day, the specialist nurse and physiotherapist that broke the news to me about Sienna visited me at home. Unfortunately, my intuition was wrong as they informed me that Noah also has Cystic Fibrosis,” she said.
A second diagnosis means even more complicated challenges
For Shelby, Noah’s diagnosis meant greater obstacles, one of the most difficult being cross-infection. Cross infection is a risk that individuals with CF pose to one another. Being that both of her children had CF, this meant separate bedrooms and separate physio-sessions for both Sienna and Noah. The hardest part for Shelby is trying to keep her two children apart so that they do not transfer specific bugs/infections to one another that can result in more severe consequences.
“Currently, Sienna and Noah both have to have physiotherapy. Sienna has it once a day for a minimum of 25 minutes, this is 5 minutes per side: back sat up, back laying down, left side, right side and her chest. As you can imagine getting a 14-month-old that's currently into everything to lie still for 25 minutes whilst you do her physio is challenging in itself. Noah is currently only 3 weeks old so he has the same areas but only 2 minutes each side, but in a few months his will be increased to 5 minutes per side also. When Sienna and Noah are well physio happens once a day as a routine, but if they become unwell physio needs increasing to 3 times a day to help kick the infection. This is obviously a time-consuming process and now with having the two of them their physio sessions have to be completed in separate rooms to avoid cross infection. This is extremely difficult as I cannot split myself in half, although I wish I could!” she said.
A fundraising campaign
‘Steps for Sienna No Stopping for Noah’ is a fundraising campaign that is organized by Shelby’s friends and family. They hope to raise money to improve Sienna and Noah’s quality of life by purchasing a Chest Wall Oscillation (HFCWO) vest – one vest costs over 8,000 pounds. A Chest Wall Oscillation vest is a vest that connects to an electric air pulse generator and helps conduct chest physical activity through high-frequency vibrations. The vest vibrates the chest to help loosen and thin out mucus. “The vest will help out with this massively, although manual physiotherapy will still happen the vest will play a massive part in helping move any mucus around their lungs as it's designed to assist patients in the mobilization of retained secretions that, if not removed, may lead to increased rates of respiratory infection, hospitalization and reduced lung function,” said Shelby.
As a young mother, Shelby is striving to ensure a better future for her children. She has even created a ‘Steps for Sienna No Stopping for Noah’ group on Facebook, where she shares relevant stories and information on fundraisers, the latest medical news on cystic fibrosis, as well as updates on her children’s health and battles with CF. The family have raised 4,000 pounds so far and their latest fundraising event will be held on March 17th, 2018 at the Royal British Legion in Burscough Village, starting at 7:30pm. Entry costs 5 pounds and will include a hot meal, raffle, and a live band. Any donation, large or small, is welcome. “I’m a 23-year-old girl whose life has now changed forever, but want to give my children the best possible chance in life by fundraising as much as possible to keep them alive,” she said.