surgery in older child

[jessie2005]

Hi all,
Everything i have read online seems to indicate that it is more dangerous as time progresses to do these surgeries. My daughter would more than likely need a saggital surgery and this one seems the most invasive too. I am so, so scared because she is 16 months now and it might be a few months before we would even get a surgery date. I am so torn and so scared with all of the information out there.

How did you all deal with blood loss? Did you or your spouses give blood beforehand? How risky is it? My mind is racing with questions. I still have not gotten a "definite" answer due to the radiologist report being confusing and my Dr. being out of the country. I am just counting on the surgery being necessary at this point because scaphocephaly was mentioned in the CT report. Anyway...need some reassurance and info if anyone with experience is online. Thanks.

[ExpatJen]

Hi there,
I wouldn't be too worried about your daughter's age at this point - I've read that in the UK the preferred age for most cranio. surgeries is 18 months old - there seems to be alot of debate about which age is best. My daughter just had her first (and hopefully only) surgery for coronal a few weeks ago and she is almost 5 years old. Blood loss was a concern for us - and our surgeon said it was an issue - but she was fine, although she did require an extra tranfusion in recovery, but they plan for that. I think that blood loss is a bigger issue the younger the baby is, not older. And as for the danger of the surgery increasing with age, I'm not sure that is the case. I am under the impression that danger isn't an issue with increased age. In fact, one of the factors influencing the 'what age for surgery' debate is that with older babies there is less of a chance that touch up surgeries will be needed because there is less growth afterwards so that the changes made a more likely to be permanent.

My advice to you is to be sure you have enough opinions to feel confident about your decision and that you are sure you've found a team of surgeons you trust. Ask them about the age debate and where they stand on it and how often they have performed the surgery on a child your daughter's age. As for the blood issue, we didn't have a choice where we had the surgery as to using our own blood but I know in the US it is pretty standard to do so, which is something I would do there since donors are paid for their blood in the US. Once you have chosen the surgeons and know which hospital you will have the surgery in you can ask them about the details of donating your own blood.

Don't panic - you aren't too late and although the surgery isn't a picnic, it is not considered high risk. What helped me was this site and CAPPS and doing as much research as I could.

Good luck, and let us know how you progress,

Jennifer C.

[Mom2William]

Jessica- I agree with Jennifer that age does not increase the danger. William was 3 yrs. old at the time of surgery. The doctors said that age was not important after the optimal time for surgery (I think under 1 yr. because of the malleability (sp?) of the skull). The skull would be harder on an older child but then after the surgery the skull would be just as strong due to the that fact. So, the only thing our PN mentioned is that older children are sometimes more "ticked off" after the surgery and will not eat as a baby is more motivated to eat and that determined for him when the child could go home. Our PS said he could go home once his eyes opened on Thurs., but the PN was the one that would not let us go until he ate on Sat. (Surgery was on that MOnday.) Will was only eating popsicles and some pudding, the doctor didn't count that as food! LOL
Hang in there! The waiting , especially for a definite answer, is very hard and frustrating. Keep us posted.

[craniomommynbaby]

I cannot answer on the older child having surgery, but I can talk about the blood donations. We did directed donations with the blood center in our area. We did not have the same blood type as Simon, but my sister and 2 of our really good friends did. They have to make sure that everything matches beyond the blood type, such as the platelets. It was a miracle that people unrelated to us were perfect matches. He did end up needing 2 units of blood plus some of the blood products. I have heard of some kids needing just 1 unit. We had 3 ready just in case, but apparently they only allow you to keep 2 in stock around here. We were lucky that the blood center overlooked that little rule after we explained what it was for.