Tuesday, May 25, 2010

In Need of a Second Surgery

Last Tuesday I took Santiago to Dr. T for a regular post surgery check up for craniosynostosis. He had endoscopic surgery for right coronal cranio on March 25, 2009 at only 7 weeks old. Our last check up with Dr. T was in November because we are going every 6 months and at that time Dr. T thought we were making good progess. Since things were looking good at our last appointment and this time of the school year is very busy for teachers, Hector and I agreed that only one of us needed to take off work to go to the checkup so I decided I would take Santiago. When we first arrived the photographer wanted to take some more post-op pictures of Santi. After pictures, they took us into the exam room. I wish I would have had Hector there with me because I did not receive good news. Dr. T took one look at Santiago and informed me that he thought we were going to need another surgery. I was crushed. I held strong for awhile but then the tears began to flow. After some long explanations about how our first surgery "fixed" the cranio problem where we do not have to worry about pressure on the brain or eye muscle issues, Dr. T explained how Santiago's orbital rim and forehead were not making the progress he was hoping to have achieved by now. He showed me some post-op pictures taken in November and I could definitely see the change for the worse. So I left the office in tears. Santiago fell asleep in the car as I called Hector to tell him the news and what Dr. T wanted us to do next. This included a CT Scan of the head and then another doctor's visit back with Dr. T.

In the next few days, Hector made the arrangements for a CT scan at Texas Children's Hospital. That took place yesterday morning and went surprisingly well. We were nervous about Santiago having to be put to sleep and the possibility of him not being able to have a scan because of a running nose. Our first experience with a ct scan was horrible and I was expecting this one to not be much better. Much to my surprise, they were able to do the scan without using any sedatives. They strapped my little boy down on a the table using towels and blankets as a swaddle and strapped his head down as well. It was not fun for Santiago. He cried for a few minutes while Hector and I rubbed his legs, talked, and sang to him. He finally calmed down and they were able to do the scan with no problems. We were in and out in less than 30 minutes! Amazing. We were so pleased that Santiago did not have to have any sedation for the scan.

Today we took the CD with the results of the CT Scan back to Dr. T's office where Dr. T and Dr. B both met us. Dr. B quickly examined Santiago's forehead and then confirmed that we were going to need another surgery. Dr. T and Dr. B both explained the procedure that Santiago was going to need and then Dr. B left. Dr. T showed us a photo album of a little girl who had the same procedure who was very close to Santiago's age. He drew us a picture of the skull and further explained as he drew what they were going to do to Santi. The pictures of the little girl gave us an idea of what recovery will be like with swelling and what not. Santiago will be in the hospital for 4-5 days and then we can take him home. Dr. T explained that he will probably be very dependent on us and clingy for a few weeks after surgery. We may or may not have to have a helmet after surgery. This time around the helmet would be more for protection than for reshaping the head like we had the first time if we have to get it. We asked to be scheduled for surgery as soon as possible since Hector and I both have the summer off. There is one possibly for a date in June and if we don't get that date we will be having surgery in July. We will know by the end of this week. Please keep us in your prayers because we do have a hard road ahead of us. We greatly appreciate all the prayers that we can get.

"You never know how strong you are until being strong is the only choice you have." That quote pretty much sums up how I have been feeling. I'm scared and I'm sad and I really do not want to put my son through another surgery but I know it's in his best interest and I know he is going to come out strong. I count my blessings because he is a very healthy little boy and I could not ask for more than that. He's beautiful and smart and he is healthy and when he is finished with all this he is going to be even more beautiful and strong. Hector has been telling me that I have to be strong for Santiago and I cannot promise that I will not cry but I can promise that I will be as strong as I can for him. It is the only choice I have.


  1. Lots of prayers for the doctors, Santiago, and you guys. I know you'll keep us updated.

  2. Hello! In short: Lily had endoscopic surgery for left coronal craniosynostosis at 3 months old. She wore the helmets for 10 months. They did not work, her head pushed right through them so we decided to quit them altogether and focus on her eyes. She wears glasses due to a "lazy eye" (her right eye goes in a little). She is also far-sided. The glasses have helped with her development immensely! And her head shape looks great although the forehead on the one side has not grown out to match the other. The most importnat thing is that the eyes are aligned. Keep this in mind. The head will continue to grow and shape itself until the age of 3 years, then it really slows down but will continue to improve itself even up to age 10! I have been on a mission to contact as many coronal only kids who have grown up. I wanted to know the results in the future for these kids. I can tell you that some even needed surgery at an older age. I tell you this not to scare you, but to look at your options, talk to other surgeons (God knows I have! :D) and see if another surgery is really necessary so soon. Some will tell you yes, others will tell you no. In Lily's case, we have decided that she looks great! So why put her thru a 2nd surgery when her head will continue to grow and therefor need a 3rd or a 4th down the road! Remember the endoscopic has been done. And it was a VERY GOOD thing. (Think how they'd look now without it- very sad). But the thing is these doctors are not talking about this same less invasive surgery anymore. Now they are looking at something more invasive. See if you can't put it off as long as possible. The results will be more set and natural the longer you wait. It's part of the reason we all went with the endoscopic in the 1st place right!? You'll be OK and he'll be OK. Just do your research and remember that you're not alone. Talk to other surgeons. You owe Dr. T nothing. He did the 1st one, and God bless him for it. But your son's fate does not/should not lie in HIS hands. I hope all this doesn't confuse you. I don't know any of the details, I just know that I have done a lot of research with various surgeons around the country, orthotists, and other parents and even patients. I've seen his pictures. He is a beautiful beautiful little boy. If all this is pure cosmetic, and not to relieve pressure on the brain or brain stem, or eyes. then you could reconsider. Also look into cranisacral therapy. They work to reshape the skull by moving the plates of the skull. I'm not saying it works, but it can't hurt! :) Bes of luck and feel free to call me with any questions. I know how you feel, I was in your shoes a few months ago.

  3. Oh no Katie, I am so sorry, I couldnt imagine having to go through what you have already! But the good thing is that you have good doctors to help guide you through this time and that this was decided before things got worse! bet of luck and please keep the blog world updated. I will be thinking of you and your family!