At her one-month checkup, I questioned our pediatrician about her odd shaped head and he said that he was watching it - not to worry about it. At two months, it was (if possible) longer, therefore, more narrow, so I questioned him again. At this point, he told us that Millie might need to see a specialist about her head. He gave us the explanation that there is a rare condition in which the bones in the head do not grow properly and surgery is needed to repair it. He went on to explain that if her head did not look better at her three month check up, he would order x-rays.

When Millie was three months old, we took her for x-rays of her head. The pediatrician had written on the work order that the purpose of these x-rays was to rule out plagiocephaly. The results showed that she did not have plagiocephaly, but the pediatrician was still going to keep an eye on her head shape. He also told us that he would not make a decision regarding her seeing a specialist until she was six months old. The word craniosynostosis was never mentioned. As it was, I looked on the internet for the term plagiocephaly, but I didn't have the correct spelling, so I kept running into dead ends. I still wonder if that radiologist knows what cranio or plagio is! So, we knew from the time that Millie was three months old that surgery might be in her future. We had decided early in this ordeal that we were not going to discuss her head shape with anyone. We didn't want to draw unnecessary attention to it. In addition, in all of the seven months leading up to the diagnosis, no one had ever mentioned anything to us about Millie having an unusual looking head. I later learned that both of our parents had discussed it among themselves, as had other friends and relatives. They simply didn’t know how to approach the subject with us. It's sad to say now, but we got used to the way she looked, and she "acted" fine. She was never a fussy baby, so we don't think she was suffering from intercranial pressure. 

In July 2000, we took Millie for her six-month checkup. It was at this visit the pediatrician gave us the referral we had been waiting for, and dreading. He wanted her to see a pediatric neurosurgeon in Atlanta. This is when we decided it was time to call in some prayer warriors for reinforcement. Millie had been on the prayer list at our church since she was 7 weeks old (due to an unrelated health issue.) On the day before we took Millie to see the pediatric neurosurgeon, some friends of ours came over to see us, with the specific purpose of praying for Millie, and for us. I think I knew (in my heart) that everything was not ok with Millie's head, but we were still holding out hope that it might be a simple thing to take care of. On August 14, we took Millie to see the Pediatric Neurosurgeon Dr. Mark O'Brien in Atlanta. Dr. O'Brien's office had requested that we bring the x-rays (from when she was three months old.) He asked us lots of questions, looked at the x-rays, looked at and felt of Millie’s head and promptly told us that she had sagittal craniosynostosis and that surgery was the only way to correct it. Just like that! No softening the blow! He said that Millie would need to have a CT scan to have a definite diagnosis, but he was very certain that she had sagittal craniosynostosis. In fact, she was a severe case of sagittal cs. We couldn’t even SAY that long word, and we asked him to write it down for us. He did and told us to go home and think and talk about this, then his office would call us in a few days. On the ride home that day, I sat in the back of the van with Millie, who was sleeping peacefully. She was blissfully unaware of the turmoil and heartache we were experiencing. That was a very quiet drive home. The only noises in the van were the sounds of an occasional sniffle, or an exclamation of disbelief. In addition to being completely devastated by the diagnosis, we were a bit upset over the fact that the neurosurgeon had been able to see the synostosis while looking at the old x-ray films. If her condition was so obvious, why had it taken so long for Millie to be diagnosed? Dr. O’Brien’s office called us two days later with the name of a pediatric plastic surgeon. We called his office and an appointment was scheduled for a few weeks away.

During the next three weeks, I was on a mission. I was determined to learn as much about craniosynostosis as I possibly could. I didn’t want this new doctor to have any surprises for us. I found lots of information on the internet. I learned that Gary and I were not the only parents who were dealing with cranio and the upcoming surgery. I will never forget the first time I found a picture of a baby with sagittal cs. I was amazed! This baby looked exactly like Millie. Then, one day I found a picture of a child who had just left surgery, and had staples holding the huge ear-to-ear incision together. That was heartbreaking and it took my breath away! In my research, I came across CAPS2000.org on the internet. This was a support group called Craniosynostosis And Parent Support. The group was founded by another cranio mom, whose son had surgery to repair sagittal cs at the age of 8 weeks. This was an amazing bunch of parents. There were before and after pictures of other cranio kids, lists of frequently asked questions (with the answers), tips on what to take to the hospital, talking to siblings, etc. There is a message board where questions could be posted, then answered by other members. I was able to read the stories of many other cranio parents. I looked back into the archives of the group and spent hours reading about cranio and surgery and what to expect. I had quite a list of questions for the next doctor we were to see. 

On September 6, we took Millie to see the Pediatric Plastic Surgeon, Dr. Greg Mackay. Dr. Mackay sat down with us for a long time at that visit. He explained what is happening when craniosynostosis is present. He told us some things that may have possibly caused Millie’s cranio, but ultimately the cause is unknown. He told us of some problems that could arise, if we chose to not have the surgery, what the surgery would involve, what to expect following the surgery, etc. He went over different surgical options, including the endoscopic surgery that was a relatively new procedure. Millie was not a candidate for the endoscopic procedure due to her age. He covered everything very thoroughly, and we felt that he had been straightforward with us. That made us very comfortable with him, and we never considered seeking a second opinion. That same day, he ordered a 3D CT scan that was scheduled for the following day at Children's Healthcare of Atlanta at Egleston.

The next day, we went to Egleston for the CT scan. We thought this was the scary part! The worse part of the CT scan was when Millie had to drink the medication (chloral hydrate) to make her sleep. She didn’t like the taste (it smelled terrible) and she fought having to swallow it. Once the nurse left her alone, Millie slipped her thumb into her mouth, snuggled up with her silkie on mommy’s shoulder and went right off to sleep. This procedure was quick and painless (at least for Millie!) I was emotional and upset (just with the entire situation) and the nurse saw me crying, so she told us we could watch Millie from outside the door. Millie breezed right through it with no problems. The scan lasted for about 10 minutes, with Millie snoozing peacefully through the entire thing. She was brought back to her little room where she would sleep till the medication wore off. Millie's room was right next to the scan room, so we could see the other children coming and going for various tests. This is the point where we realized how fortunate we were in that Millie only had cranio. We saw children who were facing a lifetime of health problems. We knew that we were definitely blessed! Millie slept for the next hour and a half. I began to speak to her and rubbed her hand. Within a few minutes she was waking up. Once she was completely awake, she drank some juice, her vital signs were taken and were fine, so we were able to take her home. She was quite wobbly for the rest of the day, but by the next morning, she was her sweet little self.

Dr. Mackay’s office called us 4 days later with a surgery date. Millie was scheduled to have cranial vault remodeling surgery on October 6, 2000. About 10 days prior to her surgery, Millie ran a temperature and we used tylenol to take care of it. When Tylenol didn't help the fever, we gave her Motrin instead. Something about that started bothering me, and finally I called Dr. Mackay’s office to see if there was a problem with Motrin. There WAS!!! We should have been given a list of things NOT to do two weeks prior to surgery, but in all of the excitement of getting her CT scan approved and scheduled, we didn’t get that list. So, here we were - one week from the scheduled surgery, and it was postponed till October 20. That left us with three more weeks to wait. I can’t begin to describe how devastating that was! We had been emotionally preparing ourselves for that date for weeks, now we had to start over, in a sense.

We used those three weeks to ask more questions and further prepare ourselves for the days and weeks ahead. Monika Cook (her daughter had cvr surgery the year before for sagittal cs) from Michigan contacted us and became our CAPPS sponsor. She sent us a care package filled with lots of wonderful items we would need for the hospital stay. I looked at every picture I could find and tried to brace myself for seeing Millie bruised and swollen. I was trying to prepare myself for a worse-case scenario, hoping and praying that Millie's case would be just the opposite of that! Our constant prayer was that she would come through her surgery and would recover quickly and easily. 

Gary and I are Christians, so we should know by now to NOT question things that happen. We should know to always trust God, and let Him take care of everything. Like our pediatrician told us many times, "Let go, and let God!" Well, that's easier said than done, but we did try. As usual, God was in control of the situation of Millie's surgery being postponed. As it turned out, leaving our other daughters worked out better with the new surgery date. They would be with friends for that long weekend and they were very excited to be going "cabin camping" for the weekend. We had made the decision to not tell them anything about Millie's surgery until right before it was to happen. We simply didn't want them to worry. Three days before the surgery, we sat down with the girls (Olivia was 6 and Allie was 4) to try to explain what was going on. First, we showed them a baby dolls head and talked about how nice and round that dolls head is. Then we compared that dolls head to Millie's head. They could see the difference once it was pointed out to them. We explained that there was something wrong in the way the bones in Millie's head had grown, and that two special doctors were going to fix those bones. We told them that a another special doctor was going to give Millie some medicine that would make her sleep for a very long time and that the doctors were going to have to operate on Millie's head, to fix those bones. We also told them what to expect after the surgery and that they would have to play gently with Millie for a while. The girls had a few questions, but they accepted it all pretty well.  

Those extra weeks literally flew by. Before we knew it, it was two days till surgery and we were going back to Egleston for Millie's pre-op appointment. Millie's big sisters went with us. We had signed them up for the siblings tour, and that proved to be very informative for them. A counselor met with us with the specific purpose of talking to Olivia and Allie about Millie's surgery. She gave each of them a bag of goodies. One item in this bag was a cloth doll (they were encouraged to draw a face on the doll and they later wrapped its head in bandages.) They were also given some little surgical booties to slip over their shoes, and a surgical hat. We were all given a tour of the hospital and were shown where we would be waiting with Millie until it was time for her operation. The girls were very impressed with the Gift Shop, Diner, and the huge fish aquarium on the bottom floor of the hospital. Gary and I were impressed with the personal attention we all received that day. 

On the day of surgery, we woke Millie at 5:00 am. She had to be completely finished with her milk and cereal by 5:30. True to form, she gobbled it all down then went back to bed for a couple of hours. Gary and I lay in bed that morning listening to a local radio station. The early morning DJ used to be the pastor of our church. As he conducted the morning devotion that day, he called Millie’ s and our name as he prayed. That was a very comforting moment for us, one we would draw strength from in the hours ahead. We had been told to be in the Day Surgery Unit at 10:30, so we left home at about 8:30. On the way to Egleston, Millie drank about two ounces of apple juice, then she went back to sleep for the rest of the drive.  

We were both so nervous!!!! Millie was in a great mood, which really made it sort of worse! We (and everyone else there) were completely amazed at the good mood she was in. She'd had nothing to eat or drink since 8:30 that morning. Surgery was supposed to have started at 11:30, but we kept getting delays from the Operating Room, so we kept pulling her around the halls in a wagon.

She waved and smiled and blew kisses to everyone we met in the hall. We knew there were literally hundreds of people praying for her and us, so we should not have been surprised that she was doing so well. Suddenly (or finally? it HAD been a long morning) the OR nurse came for us, and we took Millie down to the OR to kiss her good bye. We were allowed to take Millie to the area right outside the OR. There is a bright red line painted on the floor. We were not allowed to go beyond that point. She wasn't given any medication prior to us dropping her off at the OR doors. I had prayed all morning that God would let her go peacefully with the nurse, and not cry for us. I remember holding Millie so tight at that moment. I also remember spotting an "Exit" sign down the hall and I had the insane thought of running toward that exit with my sweet girl. Once again, God answered my prayer. She happily went to the nurse and blew us a kiss as the nurse carried her away. What a heartbreaking moment that was! This is the point where we both broke down and cried our hearts out! I hope to never experience that kind of heartache again! We eventually made our way back to the Day Surgery floor to wait out the rest of the day. The OR nurse had told us that someone from the OR would be calling us in the waiting room with updates on how Millie was doing. The first call came at 3:00 pm. They were calling to tell us that the doctor was just getting started and that Millie was doing fine. In a way, I felt better knowing that the surgery was going on because that told me she was asleep and was not crying because she missed us. Every time the phone rang, we jumped out of our skin! All of the reports were good. Around 6 pm (she had been in surgery for 3 hours at that time) the Neurosurgeon came by to let us know that his part of the operation was finished and that Dr. Mackay still had a good deal of work to do. He told us that Millie was doing fine and that her blood loss (so far) had been very minimal.

Looking back, that was the longest day of our lives so far. Millie was gone from us from 2:00 pm till almost 9:30 that night. The Day Surgery Unit closed at 6:30, so we (and everyone waiting with us) were moved to the waiting room on the first floor. By 7:30 pm, Gary and I were pacing the hall outside the waiting room, unable to sit still any longer. We had not received an update since we had seen the neuro surgeon around 6 pm. At this point, we were ready to pounce on any and every person we saw wearing scrubs! Around 8:15 pm, Dr. Mackay came for us. He took us aside to tell us what was going on. Millie had come through the surgery with no complications. They automatically start the blood transfusion as soon as surgery begins, but she lost very little blood and didn't even use half of one unit through the whole surgery. At that moment, she was in Recovery and breathing on her own. He explained exactly what they had done in surgery, and told us to prepare ourselves for the fact that she would be badly swollen by the next morning. Rather than just removing the affected suture, then making spaces in the remaining bone, they had removed basically her entire skull - reshaped the bones, then put them back. He gave us the ziplock bag holding Millie's hair - that was tough to see, but we were glad to have that for a keepsake. (That was quite a "first haircut", huh?) We didn’t get to see her until about 9:30 pm.

We rode in the elevator with her as she was leaving Recovery, headed to the ICU. She was asleep and her head was bandaged, turban style. At that point, the swelling was just beginning and she looked a little puffy in the forehead area. She opened her eyes a few times, but she was very groggy and we could tell that she was disoriented. The cracks in our hearts went a little deeper when she whimpered. The nurse told us that she would most likely sleep for the next 12 hours, and thankfully she did. 

By 7:00 the next morning, she was swollen and badly bruised. Both eyes were swelled shut. In fact, she looked swollen from head to toe! Just to glance at her, she didn't really even look like our baby at first. We taped pictures of her onto her bed.... smiley, happy pictures! The amount of bruising was astonishing! (So much for hoping for the opposite of the worse case scenario!) During my weeks of searching for information and pictures, Gary had been reluctant to look at the pictures. Because of this, he was totally unprepared to see Millie in this condition. There was some trouble getting her pain medication regulated, but once that was taken care of, she didn't really cry. She was still restless, but she was able to take several naps through the morning and afternoon. She was not interested in juice or milk. She kept kicking both legs into the air. The ICU nurse decided that her catheter must be bothering her, so the DR came by and removed that.

He also removed the head dressings. What a sight that was! The procedure Dr. Mackay had used to minimize her blood loss (tying off the blood vessels in front of and behind the incision prior to making the first cut) made it look as if Millie's head had three incisions, rather than just one. The morphine seemed to make her itch, and she kept scratching and pulling at her face. We were amazed that she could reach her head... we were scared she was going to hurt her incision.

Within 20 hours of surgery, she was only taking Tylenol with codeine. At about 5 pm that same day(less than 24 hours post-op), she was moved to a private room on the regular floor. She had been in ICU for less than 24 hours! She was becoming more and more restless and at one point I climbed into the bed with her. At 24 hours post-op, she really started waking up and moving around. At one point, she flipped over in bed, found a comfy position, and then fell asleep - on her tummy. Later that night, we were finally able to hold our sweet girl! She was so heavy from all of the extra fluid in her little body. She also enjoyed her first meal (some formula) since surgery. Up to this point, she had taken only sips of juice from her bottle. That seemed to be a real turning point for her, and us. Both eyes were still swelled shut, but when we talked to her, she would turn her head in the direction of our voice. As we settled down for bed that night, we said a heartfelt prayer of thanks to God for bringing Millie through this difficult time. We knew there would be more tough days ahead, but we had gotten a glimpse of "our girl" in her that evening and we knew she was going to be ok.

On Sunday, we had several visitors, which was nice for Gary and I. We got through that day by loading Millie into a wagon (padded with LOTS of pillows.) We pulled her all around the hospital and the gardens. She really seemed to enjoy the wagon, and she looked more comfortable in there than she did in the huge hospital bed, so the nurse suggested for us to let her sleep in the wagon. Dr. Mackay came by on Sunday to see Millie and he seemed pleased with her progress. On Saturday night while Gary was holding Millie, I had discovered that her ears looked like they no longer lined up correctly. When we saw the DR on Sunday, I told him that he had "messed up her ears." He assured us that he had not messed with her ears at all and they were fine. They were simply temporarily misaligned due to the swelling. (I'm thrilled to report that her ears did find their proper place within the next few days!) Millie ate some mashed potatoes for lunch that day - her first solid food since 5:30 Friday morning. Around 2 am Monday morning, she woke us up -jabbering. She was sitting up in her wagon, moving her head from side to side, sort of like she was looking around. We turned on a light, and to our great joy and surprise, she had one eye open. It was only open by a little slit, but it was enough for her to see. She was so happy. We sat up with her (yes, we were happy to be awake at 2 am!)for about two hours, playing and talking with her. When she went back to sleep, we discussed the fact that her eye would probably be closed again when she woke up. It wasn't! In fact, by Monday at lunch, she was sitting up in bed watching Barney on TV. Dr. Mackay came around at lunchtime and jokingly asked us why we were still there?!?! He told us that she looked great, the regular tylenol (over the counter variety) seemed to be keeping the pain under control, she was eating good and keeping that down, her blood was fine, no sign of a fever, so we could take her home. He gave the discharge orders and we started packing up our stuff! We arrived at home around 5 pm. We are all so glad to be home. I was afraid Millie would bump into things if she were in her walker, so I put her in the exersaucer for a while. She was watching a video and got excited and started jumping up and down! The jumping didn't seem to bother her at all, but the sight of her swollen head jiggling was more than I could tolerate. I put her in the walker and she explored the entire house. I think she was looking for her siters. By 7 pm that same evening, Millie's other eye was beginning to open. By the next morning, (it was a long night!) both eyes were wide open! Olivia and Allie didn't come home till the next afternoon. Olivia didn't want to even look at Millie at first. Allie barged right in and declared "Her head looks like a baseball with those stitches!" Millie started jabbering at Olivia and that's all it took. Olivia could not stay away from her after that.

The next few nights were pretty difficult. Millie did not want to lie down, for ANY reason. Gary cleaned up our wagon and we lined it with the pillows we had brought home from the hospital. We used more hospital pillows for propping her up for diaper changes, feedings... you name it! She just didn't want to lie down. If she was up and able to sit up and play and do her own thing, she was fine, but the second we tried to lay her down, her good mood vanished! After about 5 nights, we think she decided she really was safe at home and no one wanted to mess with her head, so she went to sleep without a fuss. Things just kept getting better from that point.

By the time she was 10 days post-op, all of the swelling was gone. This was our first real good look at her new head shape. Her head was very lumpy and bumpy, and we could feel all of the spaces where the bones had been put back. It felt as if someone had put the pieces of a puzzle close together, just not completely together. We took her to see Dr. Mackay for her 2 week post-op visit and he gave her a wonderful report. He told us that due to the severity of her condition, she would need to wear a molding helmet. He referred her to Cranial Technologies to be cast for the DOC Band.

On the day that Millie was one month post-op, we took her to Cranial Tech in Atlanta to be cast for the DOC Band. Band treatment began on December 5, 2000 and ended on March 13, 2001. There were some "bumps" along the way. The first few days in the band were a little difficult, but after only 5 days, she was wearing the Band for the full 23 hours per day. The only time she didn't wear her band was for baths (we would use that time to clean the band) and for a few minutes when she woke up in the mornings. We made MANY trips to the Atlanta Cranial Tech office for adjustments and head checks.

All in all, the DOC Band treatment was a good experience. I can't imagine denying her that final phase of treatment. The girls in the Atlanta CT Office were wonderful to deal with. They also fussed over Millie's wonderful progress and kept encouraging Gary and I at each visit.

Looking back on it now, we had so many questions, fears and concerns when we started the cranio journey. To say that Millie bounced back quickly is such an understatment. No, it was not an easy thing to go through, but it did give us a new perspective - on parenting and on life in general.

Right now, Millie is a very typical two year old. She talks non-stop, sings, runs, climbs (like a monkey!), loves Barney, The Wiggles, and Sesame Street. She enjoys being outside with her big sisters, whether they are playing in the sandbox or swinging, or just running around in the yard -chasing our poor cat, Kit. Her most recent conquest is learning to drive the Barbie Jeep. I have to admit, she drives like her mommy! She also likes to walk to the mailbox to check for the mail. She is an outgoing little girl with a contageous smile and an enthusiastic "HEY!" She likes to pretend she's sleeping, and she can "snore" with the best! She's just a silly girl! If we didn't tell everyone her incredible story, no one would ever know all that she had gone through. On October 20, 2002 we celebrated her being two years post-op. What a great feeling that is! Below is a picture of Millie with Dr. Mackay, taken in October of 2002.

An Update - February 2006. Wow, time flies when you're having fun, right? Millie just celebrated her 6th birthday this past December - and she is 5 years post-op. She's still an amazing little person. She is loving Kindergarten and school in general. Her teacher has recommended her for the Discovery Program. She is the same outgoing and talkative little girl. She has a wonderful sense of humor - and if she ever makes you laugh once, she goes into her "silly routine" and keeps you laughing. Millie saw Dr. Mackay last September and he is still pleased with her. She may only need to see him one more time. Looking back over the years, God has been so good to us!

Gary has often said that Millie is his hero. We are thankful for the blessings that craniosynostosis brought into our lives. We've met new people as well as come to realize just how many true friends we have. God mercifully brought us through those difficult months, and we are better parents for having gone through this time. We established this site and wrote this story with the hope that our experience might help someone else. If your child, or someone else you know is facing surgery for cranio and would like to speak with someone who has been through this, let us know. If you have any questions, feel free to contact us directly at the e-mail address below.  

Stephanie & Gary Nunnally, Georgia

nunnallyfamily@yahoo.com

UPDATED April 2008.

Millie celebrated her 8th birthday in December of 2007. She's in the second grade - and is doing great. Her favortie subjects are math and art. She knows that she had surgery on her head when she was a baby, but that's all she really knows. She is still very social and has lots of friends. She is smart, funny, loving and silly. She's a joy to her teachers and a blessing to our family. We missed our appointment with the cranio doc this past fall, but we hope to make that up in a few months. There have been no long-term affects of her cranio - other than the scar across her head. I will try to upload some new photos of her soon!

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