Our smiling warrior champ Layla-Rose was born on 21 November 2017. She was perfectly planned for. Layla has an older brother so we were super stoked when we heard we were having a girl this time. The birth went pretty well, she was just breathing fast when she was out and swallowed some #amnioticfluid, which did not raise any alarms. Her bowel movements were also normal. We were discharged and we were literally in heaven. Life was good. Around 3 months Layla got a runny nose which I treated with iliadin drops and histamine after consulting our local chemist. It then turned into a bad cough, which to me still seemed normal as I thought babies immune systems are weak at that age so picking up a bad cold is pretty normal.
We went to the paediatrician who immediately checked her breathing under her rib cage and said to me, she’s very sick, how long has she been breathing like this? Her lungs were so tight it was pulling in under her rib cage when taking a breath. We were admitted immediately and x-rays were done. She had an infection in the right upper lung and was said to have #Bronchiolitis. She went on a course of antibiotics and we were discharged 3 days later (on the Thursday). We went back for a follow up that following Monday, only to be admitted again as her breathing was still the same and even slightly worse than the week before. A RSV test was done which came back positive, again this is a pretty normal virus infants contract between November and February. She was put back on antibiotics and by day 4/5 it turned for the worse.
She was breathing at an alarming rate and out of breath most of the time. She was put on oxygen for 10 days. Again this was normal part of the virus, although to me it did seem like she was taking it worse than the rest of the babies I had seen come and go in our stay there, all only being there for about 3-5 days or so. The Doctors then reckoned this was due to the fact that she had Bronchiolitis a week before and now contracted RSV so it was like a double lung infection. Eventually after 3-4 weeks in hospital we were finally discharged (again on a Thursday). By that Saturday she was coughing so badly I could only think her #ribcage must be super sore. I took her to emergencies early Saturday morning after she had been coughing throughout the whole night. She was admitted again.
We stayed for another 2-3 weeks, when the paediatrician advised that she thinks we should consider taking Layla to Cape Town to see a paediatric pulmonologist. We then agreed and were taken via ambulance from Mossel Bay to Cape Town (4 hour drive) as she was totally oxygen dependent and her lungs were wheezing.
Upon arriving at the Christiaan Barnard Hospital all kinds of tests were arranged for her the next day. Milk screening, x-rays, blood tests, sweat test etc. She was then formally diagnosed through her sweat test with #CysticFibrosis on 24 April 2018. I will never forget this date as it was and always will be the worst day of my life. On the bright side she was finally diagnosed after a 6 week stay in hospital with no real answers. And because of it being detected so early she has a good chance at
having a fairly normal healthy life and longer life span. She was 5 months old when diagnosed. The prognosis for #CF children born today is really great versus what it looked like 20 years ago. We hope that a cure will be found in her lifetime.
CYSTIC FIBROSIS
CF is a genetic disease that mainly affects the lungs and digestive system, but it can result in fatal complications such as #LiverDisease and diabetes. The defective gene responsible for CF leads to the creation of thicker, stickier mucus than is usual. This mucus is difficult to cough out of the lungs. This can make breathing difficult and lead to severe lung infections. The mucus also interferes with pancreatic function by preventing #Enzymes from properly breaking down food. Digestive problems result, potentially leading to malnutrition. This thickening of mucus can also cause male infertility by blocking the vas deferens, or the tube that carries the sperm from the testes to the urethra. CF is serious, with potentially life-threatening consequences. The most common cause of death in people with CF is #RespiratoryFailure. Cystic fibrosis (CF) can be life-threatening, and people with the condition tend to have a shorter-than-normal life span. There is currently no cure for CF. It affects some
30,000 people in the United States with around 1,000 new cases diagnosed each year. Of these new diagnoses, 75 percent are made in children under the age of 2 years.
Symptoms
The most common symptoms of CF are:
·salty-tasting skin
·persistent coughing
·shortness of breath
·wheezing
·poor weight gain in spite of excessive appetite
·greasy, bulky stools nasal polyps
,or small, fleshy growths found in the nose
Treatment
Treatment can manage the symptoms of the disease, however, and improve quality of life.Symptoms can vary and treatment plans will be individualized.
WHAT CF MEANS IN SOUTH AFRICA
It is not part of the screening test done after birth. It is not recognized as a chronic illness in our country and the medications available overseas such as Orkambi, Kalydeco and Symdeko to name a few is not available in South Africa. This also means that CF is not covered under the #PMB (prescribed minimum benefits) benefits of the medical funds available in South Africa. The only medical aid that does cover this disease is Discovery Comprehensive Plan which is around R6000-R7000 per month just for a main member and the child with CF (2 people). And so very well stated, this
is a rich man’s disease. I, alongside all the other moms in South Africa – I am sure, are fighting for our children and their care/medication needed and want this disease to be listed as chronic illness. Also, seeing that CF is of Caucasian and northern European ancestry I feel screening tests should be implemented in South Africa and more awareness created around this. Knowing whether you are a CF carrier is important
information when planning a family.
If both parties are carriers the chances of your child being born with CF is 1 in 4 every time you conceive. Layla is such a brave- smiling- laughing little warrior. Through all of this I realized that we are only borrowed to each other and the Lord is in control. We as CF moms and even the people with CF can only do so much to prevent infections and clear the lungs, the rest is really up to God. She makes me brave and stare in the face of death and still keep me going. We have created a fund for her which will run until she turns 1 on 21 November 2018. After reaching this goal I will be doing awareness campaigns to try and raise funds to fund the foundation doing trials to find a cure and also to perhaps assist other South Africans when initially diagnosed and not having the required medical aid or funds.
She should, if possible, not attend crèche or school until she is about 5, just to get her immune system stronger to fight infection. The other issue with CF is also the hospital stays when she is culturing bacteria and needs IV treatments. This means I will be off work for long periods of time every now and then and obviously no company or business will be comfortable with this. So working from home or not working at all is actually the way to go. When these kids are sick, there physio and nebulising sessions are increased from twice a day to 4 times a day, which is hectic to manage. Please assist me in my quest as mom and also to spread awareness and assist in some way towards finding a cure.
If there are any people who would like to donate into our personal bank account they can contact me: 076 040 9799/Natalie
Also to just be supportive or explain CF to new moms or anyone