Something isn’t right,” I said as I looked up into my husband’s eyes. Our son was placed onto my chest, left cheek down. As I slowly shifted his head around, I saw what looked like an enlarged cheek. Immediately our midwife called in the doctor to check him out. Within three minutes of meeting our precious Oliver, he was taken off my chest and over to the incubator. Ear Nose and Throat, plastic surgery, and NICU were all in our room within minutes checking him over.
Hannah Bohlman
At this point I didn’t know how to feel.
My midwife was still trying to get me to stop bleeding as I struggled to see my baby. We never knew about Ollie’s malformation until he was placed on my chest. There was no time to process, research or pray. Here he was, our firstborn. We already had no idea how to be parents but then to throw in a special needs child, we were numb. Doctors and nurses became a blur of information within those days at the hospital. Ultimately they deemed that Ollie’s breathing was stable and that he could stay with us in our room. An ultrasound confirmed that what Ollie has is a Lymphatic Malformation. It is like a sponge with all these little fluid-filled sacks making up the whole of his malformation.
Hannah Bohlman
Ollie’s first two years of life were relatively uneventful.
At 6 months old, Ollie would have his first procedure. Sclerotherapy, a process of injecting an alcohol-based solution into these sacks. The goal is to get them to shrink, scar and never refill. At 9 months, we tried again. We didn’t see the progress we wanted and neither did our doctor. After that, we gave our baby a break from the hospital. He learned to eat solid foods, crawl and ultimately fill our life with so much joy that we couldn’t remember what life was like without him.
The summer before Ollie turned 2 was awful.
We were on and off antibiotics for cellulitis infections (an infection that would cause Ollie’s malformation to swell drastically) all summer long. At the end of August we finally had our longest hospital stay to date. We were there a week which in the grand scheme of things is not bad, but for us, it was a first. They had Ollie on all sorts of antibiotics to try to stop the infection. Finally, on day four they found a combination that started to reduce the redness that accompanies these infections. But through all of this, Ollie didn’t stop. We made hourly trips to the toy room. He became famous for mowing the halls with a bubble mower that needed daily refills of bubbles. The nights were rough at 36 weeks pregnant with our second son but seeing Ollie get better was the encouragement I needed. This would begin the never-ending battle of infection.
Hannah Bohlman
We started seeing his specialist on a more consistent basis and pushed for answers.
Her answer, “Start him on Sirolimus.” This is a drug that hasn’t been used with Lymphatic Malformations for very long, in essence, still in the experimental stage. We battled with her until we could see no other option for Ollie. Starting it was awful; they changed his dosing with such rapid speed that his levels never stabilized. We quit. After 8 weeks of weekly lab appointments, a child who screamed and thrashed in our arms we couldn’t take it. In all of this, Ethan, my husband, and I had reached out to Boston Children’s Hospital in Boston, Mass. They had a program all set up and had many patients just like Ollie.
