On January 28th 2013 we welcomed our third child into the world. She was simply beautiful. We fell in love instantly and her big brother and sister adored her from the start. Within a few weeks after bringing her home, I started to notice that her forehead looked a little odd but since it was mild I shrugged it off to being from childbirth. I pointed it out to my husband as well but he didn’t think anything of it either. Usually I am quick to ask the doctor about anything or bring things to her attention. I just thought that this was how she was made and that’s what her head shape was supposed to be like and that it would improve with time. We had no knowledge of Craniosynostosis…
At Alice’s 4 month checkup at the end of May, her pediatrician had some concerns. She pointed out how one eye was lifted up more and the other was droopy and thought part of her forehead was flattened slightly. So she sent us to a neurologist and an eye doctor to be on the safe side. We saw one doctor at MCV in Richmond, VA that was truly perplexed. She was on the fence whether it was Anterior Positional Plagiocephaly, which would have been the first she has seen, or Left Coronal Craniosynostosis. I remember hearing those words and thinking what does that mean…my heart started pounding and I got very nervous. She explained to me briefly what each meant and told me that since she was 4 months old, if she did have Craniosynostosis she had missed the window to have the endoscopic surgery done since they only do that at 3 months or younger. She said she couldn’t be sure until she got a CT Scan. She said we could get one now or wait and see how she looks in a few months and then do a CT. Of course I came home and started researching both…and I then began to panic and broke down crying. I knew in my heart that by looking at photos of the kids online that she had Craniosynostosis. My husband told me to try not to worry until we had it confirmed…yeah that was impossible! I scheduled an appointment with another doctor at MCV. I really wanted someone to clinically diagnose her without a CT. It was the longest week ever waiting for that next appointment. On June 18th within minutes of coming in the room, the doctor confirmed that she had Left Coronal Craniosynostosis. Tears started falling from my eyes instantly. I knew from my research that surgery would be required, there was no option…this terrified me. He said he wanted to get a CT in September 2013, and schedule her surgery for November or December 2013…the larger CVR surgery. My husband and I barely said a word on the ride home…we were really blindsided by this and it was a lot to take in. I laid around and cried a lot the next few days…I was super emotional about the thought of my sweet girl having surgery. I didn’t know how I would have the strength to make it through this.
After a few days of sulking I started researching more. I didn’t want to accept that she had missed the window for endoscopic surgery. I mean she only missed it by one month…why couldn’t they still do it? I was furious and I really started fighting for my baby and was determined to find a doctor that would still do it. I found two doctors, Dr Jimenez in San Antonio, Texas and Dr Proctor in Boston, Massachusetts. They were both willing do the endoscopic surgery. Dr Proctor said he could do it up to 5 months old and Dr Jimenez 6 months old. I was in communication with both teams and since Boston was closer we starting the process to get her surgery done there. Dr. Proctor made room in his schedule for a consult and surgery that next week. I thought everything was good to go and then insurance denied it…but only because they found a doctor in Washington DC that may be willing to do the less invasive surgery but he would have to evaluate her first before committing. A few days later we were on our way to DC to see Dr Suresh Magge. He spent a lot of time with us explaining both types of surgery. It really seemed at first that he wasn’t willing to do the endoscopic surgery on her because of her age. But at the end of the appointment he said he was willing to do it since her case was so mild he thought she may have good results but he wanted us to understand that future surgery may still be needed. We were so happy and relieved that she could be helped…but at the same time the reality that our baby was going into surgery the following week started to sink in. We really felt like this was the best option for her since this would stop the distortion of her face effective immediately after the surgery…instead of waiting months for the larger surgery and watching as her face became more distorted. I was so proud of myself though. She was able to have the endoscopic surgery because of all of my hard work. I refused to accept that she had no other options other than the CVR surgery. We knew that with the endoscopic surgery helmet therapy would be needed…and while we knew that would be a challenge we still felt this was the best option. Dr Magge said that she would need to be in the helmet for 12-18 months.
Alice’s surgery was scheduled for July 12, 2013. We had to drive up the day before for her pre op and she needed a CT to confirm the diagnosis. Up to this point I hadn’t had a lot of time to get nervous because everything happened so fast…but on the drive to Washington DC my nerves set in and I began to lose it. I didn’t know how I would find the strength to stand when they took my baby out of my arms and into the operating room. It was hard enough watching her get all of the pre op work done, I couldn’t imagine her having to be put through more pain. The thought of it made me so sick…I couldn’t eat. All I wanted to do was hold her in my arms and spend time with her. We didn’t sleep much that night in the hotel…the morning came way too fast. We had to wait a very long time before she was called back to the pre op area…which just added to the nerves. Poor Alice became desperately hungry. My husband had to hold her since I am nursing I didn’t want to upset her more…all I wanted to do was hold her tight and I couldn’t. Several hours later they came to get her…we began to crumble. I wanted to just run out of the hospital and go home…but I knew that wasn’t an option. It was truly one of the hardest things I have ever done…handing my baby over to strangers and trusting them to keep my baby safe. All kind of fears ran through my head…I was a mess. We went out to the car to collect ourselves. A long 3 hours later…we were finally called back to see her. I didn’t know what to expect. She was white as can be and limp…she was completely out and wouldn’t even open her eyes. We tried stimulating her and holding her hoping it would help. She wouldn’t eat and would only wake up for a second but she had a blank stare and was so out of it. A very long 5 hours later, she finally began to wake up…she was close to needing a blood transfusion I was told but thank goodness she didn’t.
We finally made it to a hospital room at Children’s National Medical Center around 11pm that night. It was an extremely long day. Alice showed very little interest in nursing and when she did she would vomit, this happened several times. We finally fell asleep for a little while and when we woke up that next morning all the swelling had hit. She had a black eye and her left eye was swollen shut. The left side of her face along her temple was very swollen as well. It was very sad to see her this way but she slowly started to show us a few smiles and started nursing. Her left eye started to open by the next day and just two days after surgery she was discharged and we were on our way back home. It took her a few days to really get back to being herself but she finally did and was her sweet , smiley self! Four days after getting home we received her first helmet. It was really hard to get used to it. I found myself somewhat emotional after getting it on her…I didn’t expect to feel this way but I did. I was sad that she had to wear it and that it covered up her pretty little head and I couldn’t put bows on her…silly I know, but I slowly adjusted to the idea and so did Alice. She really has done so well. She gets very hot and sweaty, especially with it being summer but she has adapted very well. She worked her way up to sleeping in it which was the biggest adjustment for her…she began waking up at night a lot. Alice is 2 months into helmet therapy and I really don’t think she is phased at all by it anymore. She wears it 23 hours a day, I clean her helmet and give her a bath during that one hour out of the helmet each day. She doesn’t really like when I put it back on her, since it can be a little challenging but that is probably because she is slowly outgrowing it. She will be receiving her second helmet in a couple of weeks, which should help. The guy that does her helmet fittings and adjustments thinks she looks great already…she really does! Her nose and mouth were starting to distort right before the surgery and one of her eyes was lifted up higher than the other, all due to the fusion of her left coronal suture. She looks better and better each week and we are very optimistic about her results already and we are only 2 months in. I highly recommend Dr Magge and we are so pleased with everything. I wanted to write about Alice’s story so that hopefully others out there that get the diagnosis will know that there are options out there and that there are some doctors that will do the endoscopic surgery, especially past the 3 month typical window that we were told. I am so grateful for sites like yours and for all the parents I met on forums that helped me so much along the way. I wrote a blog about Alice’s journey and also made a video if you would like more information.