Welcome to Caleb's Caring Bridge website! We will be using this site to keep family and friends updated in one place. Please note that "Caleb's Story" has been updated as of July.
We have been blessed with an outpouring of offers to help during this challenging time, so we have listed several things that would be a great help to the family under the "Ways to Help" icon above. Once you are in the "Ways to Help" section, you can visit the planner to sign up for different tasks to help.
In late January, Baby Caleb was air flighted to Nationwide Children's Hospital after a lengthy bout of what was described by his pediatricians as a "viral" sickness. During this visit, doctors learned that Caleb had pneumonia, as well as several other viruses and his white blood cell count (specifically a white blood cell called a neutrophil) was dangerously low. Neutrophils' role in the body are to fight bacteria. The doctors at Nationwide ran a battery of tests to try to determine if Caleb's sicknesses were caused by a naturally low neutrophil count (neutropenia) or if his low count was due to the amount of viruses he had at one time (viral suppression). Unfortunately, after a few months of numerous hospital visits, and doctors examining test results, it was determined that Caleb has a lifelong condition called neutropenia. This is not something that anyone grows out of, and in the simplest terms (without any other immunological problems) normally requires bone marrow shots for the rest of the person's life. Doctors have told Kristin and Kevin that neutropenia on its own without the presence of cancer is very rare (about 1 in 10 million).... and yet there's more. Caleb is actually much more rare than that.
Caleb has to go to the hospital anytime he runs a fever and has a low neutrophil count, as his immune system is just too weak to fight off any infection or virus he may contract. Kristin had to step away from work, as it was too risky to keep both Caleb, and his big brother Colten in childcare any longer.
However, through it all Caleb has shown tremendous strength, too, bouncing back quickly after being poked and prodded for days on end. The picture above is not long after a surgery he recently had to go through. All smiles, and baby giggles!
Fast forward to May- when the situation gets even more confusing and rare. Caleb was again life flighted to Nationwide Hospital with pneumonia for his fifth hospital stay this year. This time a new battery of tests also revealed another rare blood condition that involves a deficiency of immunoglobulins in Caleb's blood. Immunoglobulins are antibodies found mainly in the plasma cells, which neutralize viruses and bacteria. Caleb's blood was deficient in 4 of the 5 immunoglobulins.
During his stay, he was put under anesthesia for both a bone marrow biopsy and a bronchoscopy. The doctors extracted bone marrow to run tests on it, and a bronchoscopy was also done to get a good look at Caleb's lungs and airways, as they wanted to see what might be causing his repeated bouts with pneumonia. The biopsy indicated Caleb has all of his "mother cells"; but they are just not functioning properly (hence his constant illnesses). Everything turned up clear with his bronchoscopy; totally normally airways.
Back to the immunoglobulin deficiency, which actually was discovered to be the underlying cause of all of Caleb's symptoms and health problems. The doctors started giving Caleb an infusion of IVIG (intra venous immuno globulin) blood cells every 23 days, since his b-cells do not make the cells, and they are a crucial part of his immune system. Since he began the infusions in May, Caleb has not been admitted to the hospital again. This is likely due to a combination of it being summertime (out of flu season) and the treatments themselves. In the meantime, they also began an involved string of genetic tests to find a specific mutation that may have caused his condition.
After about a long six months of question marks, Caleb was officially diagnosed with an astoundingly rare (less than 100 cases worldwide) syndrome called ICF on his first birthday, July 6. This stands for Immunodeficiency Centromeric instability Facial anomalies syndrome. From their limited knowledge, ICF is typically characterized by immune system malfunction, including neutropenia and low immunoglobulins, constant respiratory infections (particularly pneumonia), learning/mental disabilities, developmental delays, and GI tract issues. A greatly shortened lifespan has also been found due to continued and irripairable respiratory damage, but an estimated age cannot be accurately determined. The best chance at a normal lifespan and lifestyle is a bone marrow transplant, which will be the next step for Caleb as they start to look for a donor match. Interim treatment will include the infusions and preventative antibiotics to help avoid significant respiratory infection.
Kristin and Kevin are prepared for another long road ahead of repeated hospital visits and extensive stays, expensive medical and pharmaceutical bills, and the emotional strain of having a sick baby as the doctors work hard to give him the best chance at a healthy life.
We thank you all from the bottom of our hearts for your support, words of hope and encouragement, and for reaching out to see how you can help!
You are truly God's angels on Earth to us. God Bless.