Leonardo's story

[leonardo08]

Leonardo is born on 8/01/2008 and he has been diagnosed of craniosynostosis soon after his birth. He is currently monitored in a hospital in <?xml:namespace prefix = st1 ns = "urn:schemas-microsoft-com:office:smarttags" /><st1:City w:st="on">Monza</st1:City>, a city near <st1:City w:st="on">Milan</st1:City> (<st1:country-region w:st="on"><st1:place w:st="on">Italy</st1:place></st1:country-region>) waiting for the day of his surgery, which is planned for the beginning of July. <?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" /><o:p></o:p>
Last Friday we met the doctors to discuss the results of CT, which was executed the week before, and they say his situation is really critical because many skull sutures are involved: bicoronal, metopic, part of the sagittal...(they call it pansynostosis).<o:p></o:p>
For this reason they think that surgery will be more complicated, with more associated risks, than the majority of the cases. They say that when they will open his skull there will be an expansion of the brain and if the blood doesn't fill peripheral blood vessels soon, there can be a risk of brain damage. Have you anyone heard about that? Can you give me advices, scientific internet links? <o:p></o:p>
They also talk about the risk of embolism. When they will have removed the front part of his skull, his brain will be exposed to the possibility of air inlet, which can cause embolism. The entity of risk and damage depends on the quantity of air entering the blood circulation system. They say they have acoustic machines to monitor his heart and detect the presence of air bubbles but everything is complicated by the fact he has a Shunt (partial communication between the left and rigth part of his heart). This is a condition which occurs in a small percentage of newborn and usually naturally disappears in the first years of life but in this case can cause problems during surgery because makes more difficult to detect the air bubbles. The anaesthetist told us that one over 2000 childrens die in craniosynostosis surgery and in my case I have all these increased risk that I can not quantify.<o:p></o:p>
I went home really scared and depressed about that. I'm terrified by the fact that my little Leonardo can have serious impairment or eventually die. I couldn’t bear such a tragedy.<o:p></o:p>
Can you help me please? tell me advices? if somebody has experienced the same problems. :pray
The hospital I’m attending is considered on of the best in <st1:country-region w:st="on"><st1:place w:st="on">Italy</st1:place></st1:country-region> but I’m scared anyway. <o:p></o:p>
Of course in the <st1:country-region w:st="on"><st1:place w:st="on">United States</st1:place></st1:country-region> research is more advanced but it will be impossible to go there because we should live our job. I’ve seen many kids who had surgery in my hospital in <st1:country-region w:st="on"><st1:place w:st="on">Italy</st1:place></st1:country-region> and everyone was ok, I also talked with many parents who were satisfied. A mother, of French origin, told me she avoided to go to hospital in <st1:City w:st="on">Paris</st1:City> because she heard the hospital in <st1:City w:st="on"><st1:place w:st="on">Monza</st1:place></st1:City> is good.<o:p></o:p>
but I’m so scared and terrified anyway!!!...<o:p></o:p>
Sometime I think that the doctors exaggerate the risks to protect themselves in the eventuality of complications during surgery. Or maybe my situation is really desperate.<o:p></o:p>
I don’t know what to think… <o:p></o:p>
The positive fact is that my Leonardo looks healthy. His psychological development seems normal. He is 4 months and seems so active and intelligent. He laughs, he answers to external stimulations very well. The doctors always ask me if I see abnormal behaviour and I’m developing so much anxiety. I feel like having the sword of Damocles on my head. :cry<o:p></o:p>
<o:p></o:p>
Fabrizio

[Candice]

Fabrizio:

I hope that the doctors went VERY in depth with the risks to protect themselves. I'm sure Elizabeth will see your post, her son Isaac is a multiple suture baby as well and just had his second surgery. I'm sure she will be able to answer some of your questions! I wish I could help you more. The anxiety you are experiencing is normal, but the fact that you are dealing with additional risks is just adding "fuel to the fire" so to speak. Keep us posted on Leonardo, he is a beautiful little boy! :hugg :hugg

[Annie]

Hi Fabrizio, i agree with Candice feeling all that anxiety is normal, it helps to do a lot of research and talk to other people as you have started doing...there are some moms here with babies with multiple closed sutures, they will be able to shed some light on some of your questions, such as Elizabeth as Candice mentioned. Hugs, all the best, will be praying for you and your beautiful baby boy.:hugg

[Abby'sMom]

I understand the worry and anxiety you are experiencing as Leonardo's surgery approaches. The "sword of Damocoles" you refer to is a fitting analogy...only do not forget that the hand of God is greater than the sword you feel hanging over you! Do not let fear steal the enjoyment of your beautiful son away from you. Even with Leonardo's complicated case, medical advances in surgical techniques and anesthesia make it likely that he will do well and it sounds like you have access to a great hospital and doctors.

I will continue to pray for God's protection on Leonardo and your family as you go through this difficult time.

[kctruvy]

I cannot imagine what your going through!
I think doctors get a kick out of freaking out the parents...they probly take bets on who will cry...
But I know this is not funny for you, as its not for the rest of us...put your trust in God...I wish I had more help for you...but someone told me that I would feel better when I accept that my child will be in Gods hands, and I have very little control over the outcome...It actually does make me feel better to picture God holding Owen in his arms when I think of his surgery.
Good Luck with your journey....Leonardo and your family are in our prayers!
Casey

[leonardo08]

Thank you all for your support!
It's very important for us to feel the support of other people who passed the same experience and feelings.

When I think of surgery I'm so scared, even better terrorized... but I know we must face and go through it.
I also know we have to be strong for Leonardo, he doesn't know what he will undergo and needs so much love... :cry

Thank you again.
Giordana

[beccad]

I'm so sorry somehow I missed this thread. I just wanted to say welcome. I know how you feel about feeling scared and worried and questioning everything the doctors say. I was the same way when Julianna was born. I knew something was wrong with her but my doctors said that she was fine and not to worry. Well I'm glad that I worried and that I insisted that a specialist see her head. Julianna only has one suture closed, her left side. She still requires surgery and that scares me to death. All that you are feeling is normal. What has helped me through all of this waiting is to live in the moment right now. Enjoy your little Leonardo and everything that he is doing right now. Take it all in and just revel in it. Love on him and even spoil him. It will make everything else just melt away when you see that smile. I will keep you in my prayers. I do believe that this is the hardest thing that I've ever had to go through. But with God's strength we will all get through this cranio journey together. I thank God everyday for CK and everyone here and all of their support.

[punkrawkd0rk]

wow I also managed to miss this post! First off your son is adorable, :) and welcome like everyone else has said! I think there are other multisuture moms on here so they could probably help by talking to you :)

[Tawnia]

I just wanted to welcome you to the site! My daughter Azia had metopic surgery (in which they remove the front part of the skull). There is a RISK of a tear in the dura (covering of the brain) but they should not be opening it so there should not be risk of embolism except in extreme rare cases. My daughter also had a hole in her heart and it caused her no complications at all. The Drs have to give all the risks to you (no matter how small) to cover them liability wise for insurance purposes. It is called "Advising the Patient of the Risks". It does not mean it is common or should be worried about really. My daughter's head was more complicated as the bone was deformed and they had to shave of 7mm to get the right shape. She was only single suture but there are many multi-suture moms on here that can help you with that part (come on Elizabeth where are you???). You can look at the post called "Isaac" under "New Posts" and see how great he looks now! Good luck with the surgery and I am here if you need support *(all the way from Canada) :)

[leonardo08]

I really appreciated all your comments!
I agree that the best thing to do is to enjoy every day because as Leonardo will grow up he will be different than now. It's useless to live in anxiety and desperation because we risk to transmit our feelings to our beautiful angels... I totally trust God that he will help and sustain me during this journey. Since I've joined this site I've developed a sense of pride for my baby. I know that I'm not alone, because many other people are experiencing the same feelings.
Thank you.

Fabrizio.

[babylaura]

I don't know anything about the surgery risk with multiple suture surgery, but ask your doctors as many questions as you need to understand. He is your little baby and he is precious. At the end of the day you know that he needs the surgery, and that while there are risks with the surgery, there are, I would think, similar risks if he doesn't have it. All you can do is put your trust in God and in the doctors. I know there are multiple suture babies on here who have come through it all just great. When Laura was in hospital for her surgery, there was a little boy on the ward who had a degenerative neurological disorder and would die within weeks, there was nothing they could do for him. There was a two month old baby with a clot on the brain. That baby's outlook was not good either. There was also a little girl with multiple suture fusion having high-risk surgery to reduce pressure, it was an emergency operation. She came through just fine. Craniosynostosis can in most cases be treated and most babies come through fine. Just hold that in your heart and know that you are doing the absolute best you can for your baby.

P.S Monza is beautiful!

[Everest]

Dear Giordana and Fabrizio,

First of all let me tell you how adorable your son is. I&#180;m glad that you found this forum. It&#180;s very helpfull, supportive and gives us the feeling that we are not alone. My son of 7 months has closure of the sagittal suture (surgery is planned to September), so no experience of multiple closures, but I&#180;m sure you will get help from people with experience in such cases. I can&#180;t imagine how you felt with all that detailed information on the risk factors involved in the surgery of Leonardo. Sometimes doctors can be a bit cruel, but please understand that they have to explain all the risks even if they are very remote. In my case I was also told that the operation is not risk free. My son has breathing problems (he is actually spending this night at the Hospital due to that), so that also adds to my concerns regarding the operation he will have in Rotterdam (Netherlands). The experience of the surgeons counts a lot, and as I see it Monza is one the best hospitals in Italy. Don t loose hope Giordana and Fabrizio, have faith and have trust in medicine! I will be sending you good vibes!!! A big hug to little Leonardo! :-)

Goncalo

[leonardo08]

Yes, I think that doctors probably exagerate the risks because they have to protect themselves from a law point of view. Anyway I'm sure they will do the best to avoid these complications because for them it will be a great success to perform a risky surgery with good results.
Goncalo I also send good vibes to you and to every child involved in these problems.
They are all beautiful and innocent angels!
Fabrizio.

[dannlark]

Welcome! I'm so glad that you found this wonderful place of support and knowledge. Leonardo is beautiful. He has those "Old Soul" eyes that are so riveting. My son is dealing with metopic cranio so I can't help you with the multi suture closings but I do know you'll find what you need here. Knowing you aren't alone in your journey is comforting and we're all here to support you and your adorable son. I'm sending you lots are prayers and good thoughts.

*Larkin

[leonardo08]

Now I'm a little less anxious! yesterday we met a cardiologist, who has a a lot of experience and is considered really good. She came from another hospital in <?xml:namespace prefix = st1 ns = "urn:schemas-microsoft-com:office:smarttags" /><st1:City w:st="on"><st1:place w:st="on">Bergamo</st1:place></st1:City> to examine our case. She repeated the ecocardio confiming the diagnosis of interatrial shunt but she said it is possible to insert a sort of plug to prevent communication between the atriums. This surgery should be executed before the craniosynostosis surgery and should reduce a lot the damage caused by possible inlet of air from his brain (embolism).<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" /><o:p></o:p>
If some air enters it can be sucked from the lungs without going in the arterial circulation sytem.

[beccad]

That is good news. When do they say they will do that surgery? I'm sure this is all a lot for you to handle, but with that surgery done it will be one less stress during his cranio surgery.

[leonardo08]

Up!

I hope some multiple suture parents will see this thread...


Tomorrow we will see the doctors again: maybe we'll have some news about operation. :pray

Bye!
Giordana

[CMMartos]

<o:p></o:p>
Can you help me please? tell me advices? if somebody has experienced the same problems. :pray

My son had pansynostosis as well (sagittal, both coronals and metopic), and they did the surgery you're describing (called a craniectomy) where they take a part of the skull off and rebuild, and he did fine. He didn't have the specific issues Leonardo had, but he did have Tachycardia (a hole in his heart), and was only seven weeks old at the time of surgery. Oh, and his dura (the covering over his brain) had torn, so I guess we were at a high risk for embolism, too, but they sorted it out just fine).

He'll do wonderfully, Mom. We'll keep you in our prayers.

By the way, if you click the link in my signature, you can read up on Jules' adventure in surgery.

[dannlark]

Sorry that it's taking you so long to figure out this operation. It must be very stressful. Are they still working out the heart problem? You both are such strong parents and Leonardo is so lucky to have you guys looking out for him. Keep us posted on any developments! You are in our thoughts and prayers...

*Larkin

[dannlark]

I was just thinking of you guys today and wondered where the surgery stands. Have your Dr.'s worked out all the things they were concerned about? Lots of prayers and good thoughts coming your way. Give Leonardo a squeeze from all of us ((HUGS)).