MAX

I wasn’t happy with the news that day on April 13^th when the doctor told me that my baby would need to be delivered by Cesarean section for failure to descend into the birth canal. My one consolation would be that my baby would most certainly be born with a “perfectly round” head just like his sister who was born the same way. At least my baby wouldn’t have a “cone head” like all of my friend’s babies did when they were born.  The c-section was scheduled for April 18^th and on that day my perfect baby boy was born. 

I can remember thinking to myself, “he looks a little off”, I didn’t know what it was…but who could I tell? My doctor who would surely think I was mad? My husband who could just lovingly stare at his newborn son hoping he would someday be pitching for the New York Yankees ? My best friend? Family? This is a secret that I would have to keep.

The next few months seemed to be a virtual nightmare. My sweet baby boy was not so sweet after all. He cried and cried. I must have stared at him for hours on end wondering what is it about this baby? What don’t I like about him?  My friends would say to me “He is so beautiful!” and my reply was, “you think so?” How awful of a mother was I? I didn’t even think my own baby was cute? They started saying that it was because he cried so much, but I knew otherwise. I tried not to be obvious when always putting hats on my baby’s head. “Maybe it is because he is bald”, I would think to myself, “when the hair grows in he will be cute.” The hair grew in and it just wasn’t there. His head always seemed to tilt to the right. I thought it was sort of odd but what did I know? The doctor called it Torticollis and said that he would outgrow it. I assumed eventually that day would come and I would finally see the beauty in my own baby’s face.  Although I loved him very much, I just couldn’t figure out why I didn’t find my own baby to be absolutely adorable. I couldn’t put a finger on his flaws but there was one that was painfully obvious, his eyes were not right and his head was not round.

I began to notice asymmetries on my baby’s face. Everyone thought I was crazy, including my friends. He even grew a fold of skin in the corner of one of his eyes! His eyes seemed to get smaller everyday.  What was happening to my baby’s face????

He was 8 months old on December 21^st, 2000 “Something’s not right with his head.” Said the doctor at a routine visit, “it looks like his skull sutures may have closed too early.” Those words will haunt me forever. I immediately called my husband in tears and told him that the doctor thinks Max’s skull sutures may have prematurely closed and wanted us to go for a skull Xray ASAP. We got the skull x-rays done and anxiously waited to hear the results.  My doctor called with the radiology report and told us that everything was fine, not to worry.

But everything was not fine. It was just then that I began to really “pick my baby apart” and notice all the things that were wrong with him. His ears were not in the same place, one was pushed forward and one was higher than the other was. He had one small eye and one big eye. His forehead bulged out on one side and flattened on the other. His eye and cheekbone seemed pushed in on one side. If you looked at him from the top his head was sort of growing to one side. I know this paints an ugly picture but my baby was quite the contrary, he was beautiful to everybody. Those big blue eyes, that cutie pie smile, what was I looking at? I turned to the World Wide Web. I put in a search for “skull sutures” and came back with the word that would later be my baby’s diagnosis CRANIOSYNOSTOSIS. The meaning: Craniosynostosis are when the sutures of the skull prematurely fuse together causing an abnormal head shape and facial asymmetries. That summed it up for me that was my boy!

But the doctor said the sutures were open. Now what? While searching for more answers online, I was directed by link to a Website called CAPS (Cranio and Parents Support). It was founded by a mother of a child with Craniosynostosis and was there to help others with the same diagnosis. I emailed the founder and told her my story, she told me that the only way to truly diagnose Craniosynostosis was to be seen by a Neurosurgeon or qualified Craniofacial Reconstructive Surgeon. I called my Pediatrician and asked if he would refer me to a Neurosurgeon for a second opinion. It took me a month to get an appointment but on January 24^th, the day was finally here. He examined my baby, looked at the x-rays and said that it was “Positional Plagiocephaly” a term given to infants with abnormal head shapes and open skull sutures. I went home and joined a support group for parents of children with Plagiocephaly, they welcomed me with open arms. I asked a few questions and found that the children here were being treated for their misshapen heads by use of a cranial molding band prescribed by their Neurosurgeons. I was outraged! How come I wasn’t offered this treatment? I researched it and called the Neurosurgeon the next day, I asked him to give me a prescription for a band and he gladly obliged. We found an orthotist that would make a mold of my baby’s head by putting plaster on it and then send out the cast so that a band can be made. The band is called the STARband and Orthomerica makes it

I posted a picture of my “not so perfect” baby boy on the Plagiocephaly support group site and anxiously waited to hear that someone had a baby that looked like mine, mismatched eyes and all. Unfortunately, I never met a mom with a baby like mine. In fact I became more and more nervous about Max’s diagnosis. One day when a wonderful caring mother from the plagio site contacted me via email, she asked for my phone number so that we could talk. Tammy said that she didn’t want to worry me but she had been a member of the Plagio group for a long time and she hadn’t ever seen a baby with positional Plagiocephaly that had Max’s characteristics. She said that she could see the ridge over his ear from t he picture. She said that I should post his picture on the CAPS site and see what the mom’s of the cranio babies would say.

I posted Max’s picture and asked the same question…low and behold, it was like I finally fit in. I found several babies that looked identical to mine. Max must have a fused coronal suture because he looks just like the other babies that have that.  All of the mom’s on the site commented that Max definitely looked Cranio.  Why didn’t the doctors see that?

 I immediately called my pediatrician and demanded a CT scan to be sure, I also made an appointment with a different Neurosurgeon so that I may get a second opinion regarding Max’s diagnosis. On February 15^th Max was put under anesthesia and given a Skull and Orbital CT scan. 

On Feb.19^th Max’s STARband was in and it was time to have our first fitting.  When I saw the fully enclosed hard white helmet that would be a part of my baby boy for 23 hours a day over the next 8 months I sobbed. Why did this have to happen? Why does he have to be different? Why will his infancy be ruined with gawks and stares?  I was devastated

On Feb. 21^st we were off to see the second opinion. He took a quick look at Max and said that he was a Positional Plagiocephaly baby. He said that he can tell just by the feel of the baby’s head. He said that he had Orbital Dystopia and that it would not improve with the helmet. He did say that possibly the helmet would round out his head. He seemed so informative. He never told us to follow up in the future. Again I felt defeated. We went home with the helmet on his head resigned to the fact that Max may always have an asymmetric face. 

I spent the next five weeks crying over Max’s face and feeling very sorry for myself. I was an active member of the Plagio group and would read the posts daily on how wonderful someone’s baby was doing and how much improvement they had seen in just 10 days.  I was so jealous and angry that it wasn’t happening for us. In fact, I thought Max looked worse than ever. I thought that not only did Max have a small eye, the lid was now so droopy!  What is happening to my baby’s face?  What will he look like when he gets older?  I was so scared for him.

On March 15^th after a really “bad eye day” I cried to my best friend. I told her that I felt like they were missing something. I wanted to say to her “ he has a fused coronal suture, I just know it” but she would think I was crazy. I know how ridiculous I sounded. I know she must have wanted to hang up on me so many times. How do you explain what you feel in your gut? How do you tell somebody that you “know” something is wrong with your baby even though the doctor’s are saying that it isn’t so? I cried myself to sleep that night as I had done so many nights before.  The next day, I searched on-line for some help for Max’s eyes. He had been to the Ophthalmologist who did diagnose him with Ptosis but thought it was more of a symmetry problem than an actual Ptosis. I found an Opthomolic Reconstructive Surgeon.  I made an appointment and brought Max to see him on March 21^st.   He seemed puzzled by Max’s asymmetric eyes and said that there was not much he could do for him other than give him a lid nip and tuck when he turned 6.  I left and returned home in tears once more.

Max had his well visit on March 28^th  . The pediatrician took a look at him and thought his head was rounding out! “Really?” I said, “because I just don’t see it.” He felt that Max had almost been cured.  Other people began to tell me the same thing and eventually I think hope took over my eyesight.  I felt like maybe his head “was” a bit rounder. After all, we had been driving two hours round trip for adjustments for almost 6 weeks now, surely something must be happening. I couldn’t wait for my follow up with the Neurosurgeon, surely he would see the changes. I was so anxious.

On April 4^th the big day arrived. I could hardly control myself in the waiting room. I was hoping that the doctor would see something that I hadn’t. He hadn’t yet seen Max’s CT scans so I brought them with me. I hoped that with them to compare, he would give Max a great prognosis and give me an estimate as to when this darn helmet could come off for good. When he walked in he looked at the back of Max’s head first, and smiled. Then it happened. He looked at Max’s face and I could just tell something was wrong. He looked at his eyes and felt the top of his head. He asked that I step into his office. My heart sank.  We sat down and the doctor said what I had feared since December 21^st. “Mrs. Galm”, he said, “Max doesn’t look good.” “It looks like he may have a fused suture.” He then proceeded to tell me that he thought it would be best if I saw another surgeon. One who specialized in “this sort of thing”. He immediately phoned the Doctor and asked if he could see me that same day.

 I sat in Dr. Greenberg’s waiting room for what seemed like the longest hour of my life. In my mind I remembered all the other doctor’s that had seen my baby and told me not to worry. I felt that this would just be the same thing. I was scared but I was anxious as well. We spent 2 hours with the doctor. He studied Max’s CT scans and  every bump in Max’s head. He asked me what seemed like a million questions. After  he was through with his examination, he asked me to sit down and then he said it. “Mrs. Galm Max has a partially fused Coronal Suture and it is my medical opinion that it requires surgical correction.” OH MY GOD! What just happened here? Wasn’t this ruled out? The next few minutes were filled with phone calls to the Neurosurgeon and my pediatrician. It was a lot of questions and some scary answers. The doctor explained that Max would get worse with time. He told me that Max was at risk of intercranial pressure and immobilizing an eyeball with the smaller orbit.  He carefully pointed out all of the “obvious” findings on the CT scans. He told me that my baby boy would need a CVR surgery and a Front Orbital Advancement. He said that it was a 5 to 8 hour surgery that came with a ton of risks. It all sounded like static at the time because I couldn’t hear anymore. I was too overwhelmed. I thought to myself “ now let me get this straight, you want to cut across the top of my baby’s head, peel his face down and saw away ½ of his skull? Is that what he’s saying to me?”

As I left the office, I didn’t cry. In fact I felt like a huge weight had just been lifted. I knew it! I knew it! I always knew something was wrong with my baby. But now it was real. A little too real. Oh how I wish I was wrong. Now I wasn’t scared about what he would look like in the future, now I was worried that he wouldn’t  be in my future. I got the surgery date the very next day. May 3^rd.

May 3^rd.! That’s not enough time and it’s also too long too wait! I was torn with emotion. I couldn’t even see straight. How would I get through the next month?

The morning of April 6^th I must go to the hospital. I need to have Max’s blood typed and screened. He will need a blood transfusion during the surgery.  A blood transfusion!  I still can’t believe this is happening! The nurse has a hard time finding a vein and he is left with an awful looking bruise.  I then go to the basement to the blood donor room. I can’t believe that I am here today. I can’t believe that I need blood donors for my baby.  I can’t stop crying but I know that I have to be strong. It is so hard. I try not to make eye contact with anyone. I feel like they can tell I am terrified just be the look on my face. I have to get through this.

 Things are happening way to quick. Now that all this is a reality, I think I am going to chicken out. Can I?  Can you just change your mind and forget all about this?

 Max’s birthday,  April 18^th, after several calls for another opinion I was told to “come right in” and see Dr. “D”. We drove to his office and I nervously waited in the waiting room. When we were finally able to see him, he looked at my son and said, “I’m not impressed.”   “What!” I said to myself, “not impressed with what?” He continued to tell us that although he too thought Max had Coronal Cranio, he felt that it was a mild case and that it didn’t warrant the risks of surgery. I asked him if Max’s head would get worse and he said that it most likely would but that the surgery was not for cosmetics, it is for intracranial pressure and Max was at a minimal risk for that.  I broke down right there in his office. What do I do now? Surgery is scheduled for May 3^rd. Do I cancel it? Do I go through with it?  In my heart I feel that my baby needs to have the surgery but what do I know? I am just a mother.

I must pursue this. I made so many calls, I can’t even remember to whom. I needed to speak to another doctor. Finally, I decided to go backwards. I wanted to go to the “expert” doctor that had told me that my boy would be fixed with a helmet, I called Dr. Goodrich. After all he is a world renowned Neurosurgeon that had  written a surgical book on Craniosynostosis.

The day was April 26^th, just one week to the day before Max’s surgery I had an appointment to see Dr. Goodrich and the Cranio Facial Surgeon, Dr. Staffenberg. I waited in the waiting room practicing all the questions that I would ask if he told me that Max didn’t need surgery. When I went in, I was ready. This would be the tiebreaker. What he said would change my life forever.

Dr. Goodrich said to me that through trial and error and a trained eye, it is apparent that Max has a partially fused suture and that he should have it surgically corrected. He told me that he would happily take Max on as a patient.  I decided to go ahead and cancel my surgery that was just a week away. I wasn’t ready and I needed the time. Besides, having Dr. James T Goodrich doing Max’s surgery, I knew he was in the best possible hands. Surgery was scheduled for June 11^th. I couldn’t believe how far away the 6 ½ weeks felt but it would be here before I knew it.  Dr. Goodrich recommended that Max be seen by a Physical therapist as well because he had a “slight curve in the neck called torticollis.”

Not terribly concerned, I called a local PT and scheduled an evaluation. To my surprise not only was Max diagnosed with Torticollis, I was told to go home and call Early Intervention because my baby had “other issues.” 

I called and had an evaluation done on my beautiful baby boy. The PT did a standard test for a baby his age and determined that my son is delayed in gross motor skills and is low tone in the trunk and legs and will need therapy two times a week. She also suggested that an OT see Max because he has a sensory disorder. Why are they all finding fault with my perfect, not so round headed baby? He walks; he is starting to babble, what is wrong with him?

I am beginning to fear the worst. He must have some pressure in his brain. Why else would he have these delays? Just bad luck? The therapist also said that my son is extremely dizzy, that worries me too.  I wish that I could just kiss these booboo’s and make them all better but I can’t.

On May 29^th we go to Montefiore Hospital to have Max’s pre-testing done and to donate blood. I am given a tour of the hospital including the waiting room, operating hall, recovery room and PICU. The whole thing starts to make it all too real.  Now I am scared to death.

It is June 1^st and I can’t help but fear the worst. Every time I look at my sweet baby boy I wonder will I ever see him again? Will he be the same baby when he wakes up after surgery? Will he wake up? What if something goes wrong? What if he losses to much blood? What if his heart stops or he can’t breathe? What will I do if something happens to him? I can’t stop crying now. I am trying not to but I just can’t help it. I am so scared for him. I am so scared for me. I won’t be able to live without him.

Here we are June 10^th. It is tomorrow. I still can’t believe it is happening. I am tired but I can’t sleep. I want to cry but I am afraid once I start I will not be able to stop. I hold my baby even though he wriggles out of my arms. When it is time for him to go to bed, I hug him and tell him I love him, as if I’ve never said it before.

Monday June 11^th. I didn’t sleep. I couldn’t. I jump out of bed and say, “could it be today?” “How did it come so fast?” Everything happens in slow motion. My heart aches for my baby. I put him into the car and think about surgery the entire trip. When we get to the hospital my heart is pounding. They call our name and we follow them into a room that has several stretchers. My baby is put into a hospital gown. He is being so cute. I rock him in my arms and tell him that everything will be all right. He falls asleep in my arms as if he knows it would put me at ease. I love him so very much. The doctor comes in and says, “it’s time”. I try not to cry. I hug him tight and say good bye. I am so afraid that I will never see that same little boy that I love so much again. After he is out of sight, I sit down and cry.

The day seemed endless. When will I hear some news? 1:00 I see Dr. Goodrich. I jump to my feet. He tells me that everything is going fine and that he just finished removing “the bone.” It leaves me with a gruesome picture that I can’t seem to stop replaying in my mind. I can’t wait until it is over.

4:00, I see them both. It is over. HOORAY! I need to see my baby. My husband and I rush to recovery. I can’t wait to see him. As I walk through the room, I look for my son. I don’t see him. I see just one child but he couldn’t be mine. It doesn’t look like Max. The nurse directs us over to the little baby that is lying in the crib hooked up to so many different wires, tubes and monitors. Is this him? Is she sure? I sob when I see him because I didn’t recognize him. He is bandaged up and virtually lifeless. I kiss his sweet hands and hope that he knows I am there.

The next few days seem to drag on endlessly. My baby swells beyond recognition and can’t open his eyes. He needs me to touch him so that he knows I am there. He is so brave. I miss my baby’s sweet face. I can’t wait to see him open his eyes. The days are long and the nights are longer. I can tell that my baby is in pain. He wants to open his eyes. I wish there were something that I can do.

June 15^th Max opens one eye a slit. We will be going home. I am so scared that something will happen but I can’t wait to get him into his own bed. So off we go. I head home with a baby that doesn’t even resemble the same baby I brought to the hospital few days ago.

We are home and adjusting. I can’t help but gasp with every step my baby boy takes. He is beginning to look more and more like himself but different. I miss his face so much. I will never look back and say that this has been an easy road. And I don’t know what the future holds for us. I do know that being a mother is one of the hardest jobs there is.  I am exhausted from the roller coaster ride of emotions. I have never been so scared in my life.  I don’t know if I believe that you are never given more than you can handle. I believe that as a mother, you have to handle what you are given, even if it is too much. I don’t feel brave. I feel that I did the best that I could. One thing I am sure of is that there is no love like that of a mother and her child. And the most important thing I’ve learned is that I couldn’t possibly love anything more than I love my children. I love you Max!

Here we are almost a year later. Unfortunately it seems that because we didn’t get treatment soon enough Max has suffered permanent deformation to his orbit and it will be a different size forever. I blame myself sometimes for not knowing better and listening to the doctors and waiting as long as we did.  There are surgeries in our future and we will always wonder about his eyesight.  Max has had tubes put in his ears and continues to suffer from fine and gross motor delays as well as speech delays.  If I could go back in time and change a few things I would wish that I was educated on the subject of torticollis and plagiocephaly as well as craniosynostosis.  My wish is that no parent has to ever go through what we have been through.  Unfortunately it is a wish that will never come true.  My advise to all of you parents that are reading this while desperately wondering what is wrong with your baby’s head…don’t wait.  Time is of the essence.  Do what you think is right and don’t wait to see a doctor.  You are your baby’s one and only advocate in this world.  Good luck!

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The information on this website should not be used for medical advice.  Medical or health advice should be provided only by medical or health professionals.

©Craniosynostosis And Positional Plagiocephaly Support, Inc.2001