Gianni's Journey with Sagittal Craniosynostosis

Hello Friends & Family!

It's been awhile since I've updated. The holidays were so busy and full of love. It was such a blessing seeing G man have his first christmas. We were able to celebrate with both families and it was truly wonderful.

Unfortunately, after the holidays we had a few rough weeks full of many doctors appointments. After Gianni's 6 month check up in early January, we were referred to a helmet evaluation to see if it would help shape his head. In anticipation for the appointment, I went down the google tunnel of what could possibly be wrong with Gianni, how helmets help babies, how long kids need to wear them, EVERYTHING so I would be mentally prepared for the outcomes. We found a PT close to home and we took Gianni in as soon as they had an available appointment.

At the appointment, he had his head scanned and measured. The PT put the measurements into the computer and looked at me and said "he is not a candidate for a helmet." I was relieved in that moment alone but then she went on and said "He does however, have concerning measurements and I recommend that you see a pediatric neurologist." My heart sank, a neurologist? He has been hitting all his milestones, why on earth do we need to go there? The PT explained it shows the markers of something called "Sagittal Craniosynostosis." She was very calm and was speaking in an overly kind tone as to not scare me. I could tell she was worried and I knew this was going to be something really tough. We called our Pediatrician and sent her the results. She gave us the referrals we needed. We found a highly recommended neurosurgeon at Lurie Children's hospital in Chicago. Dr. Tadanori Tomita has prestigious accolades and I knew I could trust him without a doubt if Gianni would require surgery.

Again I went home and googled the heck out of Sagittal Craniosynostosis. How does it happen? WHY does it happen? How is it resolved? There are so many types of Craniosynostosis but this type often ends in surgical repair. Sagittal Craniosynostosis is rare. Only 1 out of 5,000 births could lead to sagittal craniosynostosis. This condition is more rare than being born with a heart defect ( 1 in 100). I had never heard of this before and I was eagerly awaiting our visit at Lurie's Children's Hospital.

We were able to get into Dr. Tomita's office within a week. We met with him first and he expressed his happiness with his motor skills and milestone accomplishments but wanted to get an x-ray to see if it really was craniosynostosis. We went down for the x-ray and poor Gianni was terrified. He ripped out of the velcro restraints each time they took an image. Thank goodness there were only 4 images needed. Thirty long minutes later, Dr. Tomita came back and calmly explained what was really going on. Gianni did, in fact, have sagittal craniosynostosis. The sutures in his skull closed too quickly at the top, causing the skull to grow long front to back instead of the natural round shape. He explained it so calmly I almost didn't realize that he was recommending surgery. Dr. Tomita explained that Gianni was older for the surgery and it was more invasive for a child his age. They had us scheduled for surgery that day and for less than two weeks later. The sooner the better to help Gianni's skull heal appropriately. We definitely got the "worst- case-scenario" news that day.

When I got home I wasn't sure where to begin. I was in a bit of a shock. We received a packet of things we needed to complete, so I started there. Gianni would likely require a blood transfusion. Of course my son has a rare blood type, and thankfully his dad is the same, so we were able to set up a directed donation for Gianni to receive in surgery. We completed a pre-op visit with our pediatrician and made sure to get his blood work completed quickly. Then I booked our stay at a nearby hotel and waiting for the surgeons to call with the information for surgery day.

We went down to Chicago the night before, we tried to do some fun things but it was really hard to relax. We went to the big Starbucks on Michigan Ave and Trader Joe’s . Grandma Shari had come with us (THANK GOD) and watched Gianni so we could go eat dinner together. I basically drank my Guinness as fast and I could to get back there and see him .

In the morning we packed up and went over to the hospital. We checked in and things went quickly from there. Gianni was given an intensive check, we answered many questions about his health. Then, all of the sudden, it was time for him to go back to the OR. The doctors put him in a little metal crib with wheels and pushed him back. Gianni didn’t even cry, he just held the doctor’s finger . I watched them walk down the hallway with him but it was too much. I thought the three plus hours Gianni was in surgery would go slowly. The doctors update the parents through out and that was a major relief. Before I knew it Dr. Tomita was walking in the waiting room to let us know how it went. He was very happy with the results and we were EXTREMELY relieved. Once Gianni was in recovery, we were allowed to go back and see him. The photo below was right out of surgery .

He had been given morphine because he was very “active” according to the doctors. I was really hoping he wasn’t completely freaking out without me. But I would be there with him when he woke up from then on. He slept for hours , longer than expected . His reaction to the narcotics made him sleepier than most babies. He was not himself those first few days. It was extremely hard to hear him in pain the first night. I would venture to say it was the very worst day of my life. The nurses and staff at Lurie were very helpful keeping his pain controlled but he was still clearly in distress with everything going on.

Day two is when the swelling began. It was even harder to watch his little face grow puffy. Gianni’s left eye closed first and then as the day went on they both closed. This was very hard for him. We hugged and rocked him. Eventually he was able to settle listening to his favorite show “Blue’s Clue’s & You.” His new medications upset his stomach greatly and he was unable to eat the first two days. As the day went on his whole little body started swelling too. (Sad photo posted below).

Even with the swelling and pain, our little guy was playing in his crib. He really only cried when the pain medication was wearing down. After the swelling subsided enough for his right eye to open a bit, he began to come back to us even more. He was back to trying to stand up, he was rolling over in the hospital bed and even blabbering to mom & dad. He even smiled at his Uncle Steve & Aunt Kathy who brought him a giant Mickey Mouse!

Day three we were told that we could go home! Gianni had been back to eating and playing. The doctors were greatly impressed with his strength and recovery. His swelling would continue to subside and he was completely off his narcotics at this point. It was such a relief to be able to know he would be home with us soon to rest. Here is a photo of Dr Tomita & Gianni after the good news:

Now that we have been home for a few days, he has been making enormous progress. He is even smiling and communicating more. I’m so happy to see his personality snap right back after a rough week. He is such a tough little boy. Gianni has been through more than any little guy should every have to deal with. We are so proud of his strength and resilience. God blessed us with an incredibly brave boy. Thank you for your thoughts and continued prayers for Gianni as his skull continues to heal. A very special thank you to Grandma Shari for coming and staying with us through the hospital and home. We could not have done with without you! We are so lucky to have such a smart woman and grandma RN there to help us. Here is a photo below of his progress five days post op! It’s incredible to see him so alert and busy playing. He just continues to blow me away.

We have some serious healing to do still. We will go back and meet with Neurology in a couple weeks to see how his skull is healing. It could take 3-4 months for it to be completely healed. For now, we keep him in his loving environment to heal until the scar is healed. I didn't share his scar photos but I can if anyone would like to see them. It is a bit triggering to see such a graphic image on a little baby, but I know he isn't in pain and that it was for the best. While we received the worst case scenario for his diagnosis, he certainly has bounced back so quickly already. I hope this short summary of the journey brings light to such a rare condition. I hope other families are able to catch this issue even earlier. If it had not been for other blog mothers, I would have not have much information to research. I will share updates as he is healing and photos of his little noggin as it progresses. Until then, I'll be watching lots of Sesame Street episodes and & loving up Gianni as much as humanly possible.