There are a few people on the interwebs that I feel I know without having met them, mostly the “Blogging Moms” from all over. One Mom I have gotten to know is Kerry Glaser from My Baby Box. I followed her excitement during her pregnancy, and laughed as she put into words her’s and her Hubby’s experience with the antenatal video (I still giggle, its one of my favourite posts). I waited for news of the birth of their daughter, Kayla and then my heart broke as the news came through that Kayla has Cystic Fibrosis.
This is an article that Kerry has written for Your Baby Magazine, she has allowed me to share their story with you:
“This is our story:
I had never heard of Cystic Fibrosis before Kayla was diagnosed with it. I remember being in the hospital room quickly Googling what it was while the doctor called a grief councilor. My world stopped. Words like ‘terminal illness’, ‘no cure’, ‘life expectancy 5 – 25 years’, flooded my sense of reasoning. I couldn’t breathe, I couldn’t swallow. In the space of one sentence – my entire life had changed. I looked at my daughter and couldn’t wrap my mind around the absurdity of a death sentence spoken over this innocent and undeserving life.
My husband Karl rushed into the hospital room to find me sitting on the floor in shock – I looked at him and told him our baby was going to die.
Cystic Fibrosis (CF) is a terminal disease, which has no cure. Sticky mucus blocks the respiratory and digestive system, making these susceptible to frequent pneumonia. Many CF patients who live to adulthood develop diabetes and sterility. CF requires an intensive, time consuming daily treatment of inhalation therapy; physiotherapy, pancreatic enzymes, antibiotics and other medication, a high calorie diet and regular clinical follow up. As far as the practicality of breathing is concerned, imagine trying to breathe through a straw while lying on your back with three people sitting on your chest – this is what every breath feels like for a person with CF.
For the first two weeks after Kayla’s diagnosis, I was constantly at the side of her cot, terrified that she may stop breathing at any moment. My husband would force me to try and get some sort of sleep during the day while he and my mom took turns caring for her but even with this sanction, sleep was elusive.
I became a germ freak. Friends and family wanted to come over to the house to meet Kayla and all we wanted to do was show off this new little person. At the same time we didn’t want anyone near her – paradox!
So our house became a germ free isolation chamber. We would marinate visitors in alcohol hand sanitizers and when nicely pickled, each individual was allowed a nano-second’s worth of introduction. The feeling that these wonderful people stepping into our home with the potential to send our baby back to hospital remained ever threatening though.
Eventually the lack of sleep, physical demands of constant treatment, detachment from society, stress and exhaustion resulted in me suffering from acute post- natal depression.
I spent my first few months of motherhood on a chair or when I was lucky, a spare hospital bed. For 15 weeks we shifted between the pediatric ward, ICU and theatre. Life as a mother was as far removed from my understanding as day is from night. I had to watch helplessly while Kayla had a gastric feeding tube inserted through her tummy into her stomach because she refused to eat. While in hospital, she had pneumonia 3 times, whooping cough and bronciolitis. Her daily treatment consisted of drips, blood been taken, excruciating bowel movements, enemas, suppositories, suction through her nose into her throat twice a day, physiotherapy and suffering severe nappy rash due to all the medication. She also had 2 blood transfusions. On two occasions she came desperately close to losing her life.
Her daily health routine is extremely time consuming and intense. It consists of administering over 17 different medications, 2 hours of physiotherapy and 1 hour of nebulisations (direct humidification).
Kayla has since been diagnosed with two additional complications, the first being Tracheomalacia or weakened trachea. This weakening is a result of underdeveloped cartilage together with a misaligned heart valve, which adds pressure to the trachea.
The second is Distal Intestinal Obstruction Syndrome or “DIOS”. DIOS is a painful blockage of the intestines and in Kayla’s case she needs assistance every time she has a bowel movement. This entails massage of the stomach as well as a glycerin suppository. And when that is not affective – I am forced to give her an enema.
The change in our lives has been dramatic. CF has put incredible pressure on my marriage, as I can no longer work with Kayla needing around the clock care. Add in the financial strain of CF on families – a significant stress. Kayla’s medications literally cost thousands every month and will continue for as long as she is alive.
Life of a CF mom is watching life go by through a hospital window. It is incredibly lonely, because while you are stuck in this nightmare, life goes on for everyone else. I wish I could take Kayla to baby aerobics, birthday parties or a shopping center. Instead, all she sees is the inside of hospitals, operating rooms or when she is lucky, her own bedroom.
Our thought process is probably very different from that of a parent with a ‘normal’ child. We take every second spent with Kayla as a blessing. Milestones whether big or small are massive celebrations for our family. We take tons of photos; videos and I have started memory books and boxes for Kayla so we can remember as much as we can of her growing up. I can’t think of the future – it terrifies me. All I know is that I have to appreciate every second that I am given with my daughter. Every birthday she has – we will celebrate. Kayla has already touched and inspired so many lives. She may only be 6months old, but has the fighting spirit of David against Goliath. My baby girl has a miraculous calling on her life and will inspire thousands.
God has trusted us to look after a fragile and incredible angel.
Her health is something we will never take for granted. I know that we have to accept the fact that Kayla will inevitably need a lung transplant in the future and we have no idea what Kayla’s life expectancy is – all we know is that our time with her is limited and we are going to make every second count.
If Kayla is strong and courageous enough to fight through the pain of this disease every moment of every day, then what excuse do we have?” – Kerry Glaser
For those of you in Cape Town, there is an auction taking place on the 12th July at The Lagoon Beach Hotel. For more information join the Caring for Kayla – Glaser’s Facebook page (if you not in Cape Town, join the page anyways).
Kerry and Karl, I wish you all the support and strength during this journey with Kayla. She definitely gets her fighting spirit from her parents. Kayla, you are amazing and beautiful, enjoy every moment with your wonderful parents.