CRANIO… What? How do you spell it again?

When Bumbum came home from the hospital we were too happy and relieved to notice something was just not right. We were just too happy to have him home and did whatever we could to make him comfortable. After a few weeks Junior came home and we just felt complete. But like every mom I kept on admiring the faces of my babies and that is when I noticed that Bumbum’s forehead just did not look right. It had a strange bulge and I could feel a strange bone in the middle of the forehead. I wondered if he had bumped his head on the sides of the crib and changed the crib bumper to a better thicker one. I thought that the bump will go away with time. But it did not. At the next pediatrician visit we brought this up with his doctor and he said that it might be from sleeping at one side. It will get better with time. Months went and his head shape just did not seem to get better. We changed pediatricians, asked the NICU neonatologists when we met them No one seemed to have an answer to us. But fleetingly someone mentioned a word “ridge” to me. I was really keen on finding out what this bone was doing in the middle of my child’s forehead. My husband was calm; he said that since the doctors are saying it will get better with time, it will. I just did not feel right about the whole thing. After I got home and got free from all the chores of the house I took my laptop out and tried to Google out “ridge on forehead”. And that is when I found out about CRANIOSYNOSTOSIS.

My little boy was suffering with something which is an extremely rare disorder. METOPIC CRANIOSYNOSTOSIS, which means the Metopic suture in his skull fused prematurely. I think it’s 1 in 2000 kids that get affected. My search for an answer did not end there. It was in fact just the beginning. By the time I found a name to the thing on his forehead, I got more nervous since all the websites talked about surgery. I had to find a neurosurgeon, and I won’t get an appointment till our pediatrician agreed. I played a small game, I told my ped that the NICU doctors were worried about his head shape and wanted us to go to a NS. Bumbum had turned 8 months when we finally got the appointment. I thought my whole confusion would end with the appointment with the NS, but this being a rare disorder no one knew much about it, yes not even this NS. I kept searching, talking to parents who had kids with the same condition, networking, getting in touch with experts, till I found one doctor in New York who is a big name in the craniofacial world. It took me another 2 months to get appointment with the plastic surgeon, another 3 months for the NS appointment. By the time we got a confirmed diagnosis and a CT scan done Bumbum was 13 months old. The only factor that all our doctors agreed upon was that this will not cause him any brain damage. They seemed to be very confident about this one point and thank God for that. Like our cosmetic surgeon Dr. Staffenburg  puts it, this is not a brain surgery, this is a bone surgery.

 There was a time I could not even spell craniosynostosis and now I know what any non medical professional can know about Metopic. I have joined causes supporting this rare disease and I have been in touch with many mothers who have been through a journey similar to ours. Most people get their kids diagnosed before their first birthday and majority of the surgeries happen in the first 6 months. My boy was not even diagnosed in the first 6 month of his life. Well all that is behind us and we are heading to New York tomorrow where he gets his surgery done. I have been through a varied range of emotions in the past one year. I have tried to reach out to anyone who I felt would have even an iota of information on this subject. I blamed myself for this condition till I realized that this is a spontenous thing. D or I had no hand in this. The main problem was that the medical fraternity has different views on the treatment. Some think that surgery is inevitable, some don’t. We got stuck in the dilemma of doctors. It was tough to come to a decision. What was awesome in it all was how strangers, moms and dads of kids having the same condition as Bumbum’s came together and supported us in this journey. I am truly humbled at this whole experience. Parents sent me pictures, emails, notes on what they went through. The verdict from the parents was common, go for the surgery. One mom called it a major surgery with a very low risk. I am not sure how the surgery will go. I am a mom who gets upset when Bumbum or Junior cries from the shots. I have no clue how D and I am going to face the coming days. I know it is going to be tough. Bumbum is going to be scared. He is going to sleep most of the time post surgery, but I am not sure how he will react when he wakes up. There are too many questions in my mind, but not many answers. Time is the strongest healer and with time it is all going to be OK. We have survived NICU. We will survive this too.


4 responses »

  1. I read through the post and now understand what you were talking about. You have been incredibly brave through it all and I am sure everything will be fine. All the best for NY and please keep me posted about how it goes. I am here if you need to talk about anything.

    Love and hugs


  2. Hi, hope the operation has gone off well. You guys have been really brave. Bumbum is apecial. He has conquered a challenge so early in life. He will soar over everything after this. You guys take care and keep your chin up

  3. Hi,
    I dropped in to your blog through Parul’s.
    I have twins too..and they too were preemies(born at the end of the 8th month).

    I can so relate to your trauma and pain. And while going through your blog, I can understand the amount of patience and strength you need to have to cope up.

    May God fulfill your prayers and give good health to Junior and Bumbum.
    I’ll remember you in my prayers.


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