Nikhil – Metopic

Read the full story and blog here: http://nikhilscraniojourney.weebly.com/story/category/all

 

nikhil_smOur Cranio journey started on October 1st 2012 during a followup appointment for Nikhil at the Plagiocephaly Clinic at BC Children’s Hospital, Vancouver. Nikhil had a flat head since he was about 3 months old and his Pediatrician had referred us to this clinic to get it resolved. I had been there once before and this appointment was just a followup to make sure the flattening on his head had not worsened.
Nikhil came into this world on May 7th,2012 via a c-section delivery.He was born early at 35 weeks, and after having a difficult pregnancy I was looking forward to spending time with him. Although he was a little premature, his vitals were all okay. They still kept him in the nursery for an extra day because his rapid breathing had to be monitored and had a low birth weight. Other than that, he was just perfect ! The first time I held him I cried. I didn’t want to let go of him. I couldn’t believe it for some time. After being on strict bed rest for grueling 3 months and scared all the time of what will happen to my baby, he was finally here and he was all mine !! Honestly, I did notice his head before. The flattening was one thing, but the shape of his head was irregular. I had not seen this with Neil (my older son) so the thought did cross my mind. But then I thought maybe he is just born with a little irregular head. Big deal. He is still perfect. and then when you see your baby day in a day out, you don’t pay so much attention to it.
It was at 5 months and during this appointment the therapist mentioned touching his forehead that he had a fused ridge. At that moment, I didn’t really understand what that meant. She asked me a lot of questions after that and I started to get a little worried. Then she explained how a fused suture can lead to brain pressure, cosmetic issues and developmental delays. She wanted to take a second opinion on this and asked me to wait till Dr. Smith finished with his session on Plagiocephaly with a group of parents.  I must say I had already panicked but was holding on till I could get a second opinion. I guess I wanted to hear that nothing was wrong with nikhil and everything would be okay as it was before I went there.  Dr. Smith didn’t say what I was expecting. They never mentioned the word Cranio but he talked about the problems this can lead to and that he would refer us to a Neurosurgeon to have him checked out. When he said, the treatment option is surgery only, my heart just dropped and there was a knot in my throat. This appointment wasn’t supposed to end like this. It was a simple followup. What the hell was going on! I asked a lot of questions there for which I just got one answer, “The Neuro will be able to answer all your questions. Wait for their call. In the meantime relax. It will be okay”.
How can I be okay ?!! I walked back to my car with Nikhil sleeping peacefully in his stroller. I started to cry. I came home and cried for a long time just holding him. I gave my husband, Salil a call and updated him with everything and couldn’t speak much really. I was angry, confused, upset, worried and it was a flood of emotions going on inside.

Waiting for the phone call…..

Many say Googling is a bad idea. At times like these, it can freak you out. But when someone tells you to relax and wait for a Neurosurgeons phone call, thats the only way out. The therapist had not mentioned the word cranio to me. So I just started looking up terms like infant skull fused ridge etc. Then comes up a really long and difficult word to pronounce — “Craniosynostosis”. It took me a lot of tries to get that right.
Craniosynostosis is the term used to describe the premature fusion (closing) of one or more of the sutures of a baby’s skull. If a suture fuses prematurely, growth of the brain cannot occur evenly and an abnormal head shape results. Craniosynostosis occurs in about 1 in every 2500 live births.
After reading the facts, seeing numerous images of babies who have this condition, it freaked me out! But I had to find out. That and the next day pretty much went just on google, reading up whatever I could get my hands on. Blogs, forums, pictures, everything. I could see a similarity in those photos and Nikhil’s head. He had the same pointed forehead, pinched temples, the not-so-spherical head shape. Yes. It started sinking in that my son does in fact have Craniosynostosis.
Every day felt like a lifetime. I was literally glued to my cell phone. I would carry it everywhere, even when I took a shower. still the damn thing didn’t ring. I waited for 7 days. 7 whole days to hear back from them until finally I called the department to follow up. It is always at times like these when the staff has to be out on a vacation. Apparently the lady who I was seeing was out on vacation and had not forwarded our papers to the Neuro department yet! I was literally fuming when I heard that. How could she be partying and having fun while I have been crying my eyes out and desperately waiting for the call ! How much effort does it really take to just forward the referral documents to the right department !! I waited for another 5 days. After a total of 12 days desperately I called the office. I learnt that I need to shake a few cages if I wanted to get this done quickly. After a few phone calls I got hold of Dr. Smith somehow and spoke to him. He was very sympathetic and was actually surprised that we hadn’t been referred.  Thanks to him, I got a call from the Neurosurgery department the same day and was given an appointment for November 26th. Almost 2 months from when I first got the news !

The Wait…

The following month went slowly. We couldn’t do much but to go back to Google and research. There isn’t a lot you will find about this but theres this website we came across www.craniokids.org. This website is specifically for children and adults with craniosynostosis and its a great medium to connect to parents who have already taken this journey. Reading peoples experiences over this forum and their blogs brought tears to my eyes. Looking at some pictures, I felt the same pain these parents must have gone through and what we might go through in near future. Its difficult for any parent to imagine their child lying on the hospital bed engulfed with IV and tubes with monitors beeping away.  We contacted a few parents over the forum but started concentrating on the Vancouver area. I also spoke to a Vancouver mom over the phone. Her son underwent this surgery 3 yrs ago. One thing she said will always stick in my mind. She said, I know you are scared & sad but remember there are worst things happening to children. What your son has can be fixed. And that was the silver lining I needed.
What I kept reading on the forum was that babies are extremely resilient to pain. They bounce back quickly. That was reassuring. Going through all the information had unknowingly given me the strength to move on.

A Call to Dallas…

We were still waiting to see the Neurosurgeons here and the suspense was killing me. But thanks to the forum, many parents referred a doctor in Dallas, Dr. Fearon who is a craniofacial surgeon specializing in this field. We could approach him for advice via email and we did just that. We contacted him seeking an opinion on whether Nikhil actually had cranio and sent him his photos that we had taken almost every day since we got the news. It hit us when he wrote back that yes, Nikhil would need corrective surgery when he is about 9 to 11 months of age. I really wasn’t expecting this. In my eyes, my baby was perfect. We decided that down the road we should fly to Dallas to meet Dr. Fearon for an in-person consultation. For the time being, we wanted to hear what the neurosurgeons here had to say.

Another Scare…

While this was going on, we had another hiccup on the way. Nikhil was 6 months and during a follow-up appointment with nikhil’s pediatrician, she heard a heart murmur which didn’t feel right. She called another doctor who practices next door for a second opinion. Both had glued their stethoscopes to Nikhil’s chest for a long time. I remember I had started to go numb at that time. The doc looked at me and said that you need to see a Cardiologist and get this checked out. The heart murmurs can be completely innocent or could also be abnormal which means there is a structural defect in the heart. I felt like punching the wall. I was angry more than being upset. I couldn’t believe it, really. What more is God going to throw at us !  Our appointment with the Cardiologist was a week before we met with the Neuro. They had his ECG taken and also did a echo test which is an ultrasound of the heart. Although both tests are painless, I didn’t like them. Seeing some wires stuck to your baby’s chest is never a pleasant sight.   Luckily, the cardiologist had nothing bad to say. His murmurs were innocent and even a follow up wasn’t necessary. We were very happy that day. Nikhil had a healthy heart !!  :)
(Story continues on:  02_first meeting) http://nikhilscraniojourney.weebly.com/story/category/all