In the last six months, multiple people have advised us that keeping McKenzie in a bubble isn’t “good for her”, “won’t help her build an immune system” or they have voiced how unfair, unfortunate or inconvenient her health restrictions are.
So, I invite you to learn the reasons for McKenzie’s “bubble”.
McKenzie has Trisomy 21 ( down syndrome) and CHD ( congenital heart disease).
Children with Down Syndrome have abnormalities in their immune systems, as well as low muscle tone. The abnormalities in the immune system increase the risk of developing autoimmune disorders, pneumonia, other respiratory infections and gastrointestinal infections.
Children with CHD have weaker immune systems than the average child. They can end up in the hospital for illnesses that others recover from on their own.
McKenzie didn’t have the flu, or even a cold – McKenzie didn’t get sick because she’s in a bubble or restricted.
On December 6th, McKenzie went under anesthesia for a minor feeding tube operation. Anesthesia weakens the immune system and suppresses automatic functions such as movements of the digestive system. The weeks that followed this procedure, McKenzie caught a “bad germ”, this caused her small intestine to stop functioning properly and the bacterial then began to grow. The result of this infection..
7 calls to on-call specialists
6 doctor visits (1.5 hour drive each way)
1 echo-cardiogram to clear her with the cardiologist
a month of zero weight gain
1 e.r visit
5 days in the hospital
1 day of IV fluids
8 medications – 3 antibiotics.
4 blood draws
2 radiology ultrasounds/exams.
3 weeks of irritability and discomfort
1 week of being completely lethargic.
Multiple loads of laundry
Endless nights of research
Ultimately, McKenzie’s formula was changed to an amino acid-based, hypoallergenic formula that she could tolerate. She now has a second bag to feed with that allows “venting” air from her stomach during her feeds and multiple follow-up appointments.
McKenzie is our world and her bubble is to protect her. We base every decision we make on what we feel is best for her. When you become a parent, you’d do anything to keep your baby / child safe. When you become a parent of a baby / child with special needs, you face the ultimate fight. The fight for understanding and patience. The fight for services and knowledge. The fight for comfort and stability. You face the fight within yourself, to ensure you’ve left no stone unturned, to ensure you’ve done anything and everything in your power to give your baby a quick recovery and prevent them from becoming ill.