Darcy was born full term weighing 6# and 13oz on March 21, 2016. She had some molding of her skull but it evened out within hours of her birth, and I didn’t give her head shape another thought while in the hospital. After we got home, I was holding her and I noticed a ridge down the center of her skull. I also didn’t notice a posterior soft spot. I googled it, and craniosynostosis popped up. I am a nurse, and I thought to myself, “You’re looking into this too much, she’s fine.” So I closed the web page and forgot about it. At Darcy’s one month appointment with her pediatrician, he was doing his full assessment of her when I remembered. I said, “She has a strange ridge down her head.” He responded with, “Yes. We need a CT scan of her head today.” WOW. That escalated quickly! Trying to remain calm I asked him what his concerns were. He stated that he wanted to rule out craniosynostosis. I knew right at that moment she had it. I knew because I had known two weeks ago when I initially felt that ridge. Within 2 hours, we had our diagnosis and a referral to meet with a neurosurgeon in 2 days.
At that appointment, the neurosurgeon confirmed the diagnosis and referred us to the craniofacial surgeon on his team. We met with that surgeon the following day. He explained that a full cranial vault remodeling would be most beneficial for Darcy. We had initially wanted the less invasive surgery, but after talking to him, we felt confident in his decision. We were concerned we would have to wait a few months for the surgery. The craniofacial surgeon told us that was not necessary. He could do the surgery once she met his rule of 10s: at least 10 weeks old, a hemoglobin level of at least 10, and at least 10 pounds. We set a date for her surgery to be done when she was 12 weeks old on June 15, 2016.
In between Darcy’s diagnosis and her surgery date, I consumed all of the information I could find. That’s how I found Cranio Care Bears. I read every single success story and each brought me immeasurable hope. We got our care package from Cranio Care Bears and bought button down onesies and outfits. Her surgery date creeped up and we were ready to go! I was so worried about her being hungry, but because she was breastfed, I could feed her 4 hours before her surgery scheduled for 8:00am. I nursed her at 4:00am and 2 hours later at 6:00am we took her straight from her crib to her car seat in an attempt to keep her sleeping. It worked! Once we got to the hospital, everything was so busy she didn’t even notice she was hungry. Kissing her sweet face goodbye before her surgery was so hard. My husband and I just prayed. The wait during the surgery was HARD. I tried to read, my precious family who had come tried to distract me, but it just doesn’t happen when your child is having neurosurgery. They called and gave us hourly updates and around 4.5 hours later, they were finished!
We went to the PICU to see our baby, she just looked so pitiful. They left her breathing tube in overnight so they could monitor her closely and keep her very sedated. Sleeping on that little pull-out couch with my 6ft husband was a trip (find humor in small things–it makes everything better). She did require 2 blood transfusions but she responded well. The worst part was when they pulled her breathing tube. They had to turn off her sedation for a few hours prior to doing that to make sure she wouldn’t be too sedated to breathe. She was crying around the tube because of the pain and kept crying for about 30 minutes when the tube was pulled. It was hard, mamas. But we survived! Her eyes did swell mostly shut, and changes in position made her cry, but we established a routine of vital signs, pain medication, diaper changes, and nursing. After 5 days, she was discharged home on Father’s Day.
We are so grateful to our excellent surgeons, amazing family, and most of all our God. He kept a watchful eye over our baby and allowed her to heal beautifully. Darcy is now a rambunctious 13 month old with zero developmental delays.
We are grateful every day for the many blessings we received during our experience. If your child has just been diagnosed with craniosynostosis, know that I have prayed for you. There is hope and healing. It will be hard, but it will be worth it.