A Mother's Instinct: Our Journey With Craniosynostosis

When my baby was born I was so happy, my whole pregnancy had been a struggle. I feel like if something could go wrong, it went wrong. I had 19 ultrasounds and was considered a high risk pregnancy because I have Hashimoto’s, an autoimmune disease. Fenn was born by emergency c-section at Mt. Sinai Hospital in Toronto, Ontario. When he was having his check ups, the doctors and nurses kept commenting on his perfectly round little head. One of the nurses commented on a ridge on his head, but she said it was normal, and as new parents, my husband and I thought nothing more of it.

The first obstacle we faced was breastfeeding. Because of my thyroid condition, I didn’t have much milk. Fenn wouldn’t latch. For two months I visited a widely respected breastfeeding doctor, to no avail. Whenever I had the baby on his side to breastfeed, he screamed uncontrollably. Finally, I gave in and bottle fed him, much to the disapproval of other Toronto mothers. Now that we had gotten into the routine of feeding, we faced yet another problem, projectile vomiting. This wasn’t normal spit up, he was really throwing up hard and often. We visited ER’s around the area where we were living in St. Catharine’s several times, two different hospitals, only to be told he must be allergic to formula. I knew something wasn’t right — mothers know. You get this feeling deep in your gut, and you should always listen to it.

At our last visit to the breastfeeding clinic, a new doctor who was interning with our specialist mentioned the word “Craniosynostosis.” I spoke to the specialist and he simply said, “just ignore her, she’s new and overly thorough.” As soon as we got home and I figured out how to spell the word, I knew in my heart this was it, my son had Craniosynostosis, a congenital defect that involves the skull fusing prematurely. This meant major surgery and a bunch of unknowns for us. I allowed my mind to wander all night while staring at my perfect sleeping baby while I cried.

One day, Fenn was particularly sick to his stomach and I was fed up. We had moved back to Toronto at this time, and my mother said, “Enough is enough, walk him to Sickkids Hospital to the ER.” So I did. I was nervous because I was telling them Fenn had the flu as my way “in,” since other doctors had dismissed my concerns before. The admitting nurse looked at Fenn, she looked at us and she asked, has anyone ever talked to you about Craniosynostosis? I said, “Yes, actually, that is really why I’m here.” She said reassuringly, “We will deal with this tonight,” and put us in a room to wait for a doctor. A doctor came in and said Fenn would be having a MRI that night. We got the results back early in the morning, we were tired and still sitting at the hospital, worried he would confirm our fears. It was true. Fenn had Cranio and he had two sutures closed. We were told the likely reason he was throwing up so much was because of swelling on his brain. His brain had nowhere to grow with the skull fused. His fontenelle had closed as well. His particular Cranio, Mercedes-Benz, only happens one in 40,000 births and it was rare he didn’t have other syndromes attached to his condition. After a lot of genetic testing we were cleared for other syndromes.

That night we met with our angel, the head of plastic surgery, Dr. Forrest. He assured us he would take care of Fenn immediately. We scheduled surgery that night for a month later. If I hadn’t kept pressing to find answers about my son, he could have had brain damage and our lives would have been much different than they are now. He had two surgeries and they did a newer procedure on him. Typically, Cranio kids have the surgery where they cut the skull ear to ear and they wear a helmet to reshape their head and it’s largely a cosmetic procedure because it can cause deformities. Fenn, however, appeared to have some pieces of his skull growing into the back of his head in the MRI and they were afraid pulling his skull off to reshape could cause brain damage. So he was cut ear to ear and fitted with these two little bug like devices called “distractions.” We had to turn them with a special tool twice a day for two months, and at the end of three months, he had surgery to remove them. We spent much of that summer at the hospital due to infections at the site of the distractions, but I never felt sorry for myself or Fenn because I knew we were in good hands and he was so brave and strong.

Since his operations, I speak openly and connect with other parents going through the same situation hoping to encourage them and let them know there is life after Cranio. Fenn is now a healthy, funny, positive and outgoing 7-year-old. He asks about his surgeries now and again, and we look at pictures and chat about it. He has since been diagnosed with Chiari Malformation and a sleep disorder. I feel fortunate his condition was treatable.

As I go through life, I tell every mother to trust their gut feelings. Sometimes our feelings are more accurate than a doctor’s diagnosis; keep fighting to get answers. Connect with others in similar situations, find your strength in those people. Share your story and reach out. The people who were there for us during the surgeries will never be forgotten.

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Thinkstock image by Sjale