Delivery went well and Presley Leighton was born on 3/28/13 completely asymptomatic. She had a chest x-ray done within the first 24 hours and the CCAM did show up on the x-ray. Two months later, we had another chest x-ray done and the x-ray did not show the CCAM. While the physicians assistant was optimistic that it might have resolved itself, I learned on my CCAM mommy boards that this is fairly common. We scheduled a chest CT scan last month which occurred right before she turned five months of age. A follow up phone call with the PA showed that the radiologist DID see the CCAM on the CT and that it was actually in the center lobe and not the bottom lobe of her right lung as we had originally thought. We did not find out any further information from the PA at this time. We simply set up a follow up appointment with the actual surgeon to go over the radiologist's findings and discuss next steps.
Presley
had her appointment with the pediatric surgeon this morning (9/12/13) and I left feeling
very confused and conflicted. First of all, the mass is still present and is
3cm x 3cm which means that it comprises about half to three fourths of the
center lobe of her right lung. However, the radiologist was
unable to actually identify the cysts and instead said that it could possibly
be a trapped pocket of air thus indicating that there is a possibility that it
might actually be Congenital lobar emphysema instead. Congenital Lobar
Emphysema is a respiratory disease that occurs in infants when air enters the
lungs but cannot leave easily. The lungs become over-inflated, causing
respiratory function to decrease and air to leak out into the space around the
lungs. Most of the severe cases of Lobar Emphysema can be identified at birth
as the lobe continues to inflate and inflate and inflate. We would’ve noticed
it already if that were the case. However, it could be deflating but slower
than normal. She does not believe this to be the case though. She still
believes that the mass is actually a CCAM. Either way, they would be treated
the same way (with surgery) and would probably only be able to rule it out once
it had been removed. According to the surgeon, the location of her CCAM makes it a
little more difficult. The center lobe is the trickiest to operate on so she
would prefer to wait six months and repeat the CT scan again. If the CCAM is
still present, we will operate then.
An outsider might view this meeting as good news. No parent ever WANTS there child to require surgery. Why opt to have the surgery now when she hasn’t displayed any symptoms in the first five months of life? Well, according to our surgeon, most chest infections occur between 12 months to 18 months so it’s not quite as likely that she will demonstrate symptoms during this first year. They might show up a little later and by that point, she will have damaged tissue from the infections. From my perspective, I'm terrified that every single cold that Kendall brings home is going to turn into a chest infection and then pneumonia. To me, I keep wondering why wait if you’re just going to take it out in six months anyway? The period of time that we will be waiting will actually occur during cold/flu season which in turn make her more susceptible to chest infections. By the time she has surgery in six months, will she have built up scar tissue that will make the surgery even more complicated? Additionally, how much more difficult will recovery be for Presley be in six months? Right now, she isn’t mobile. In six months, she will be crawling and possibly even walking. Will it be more difficult to keep her still while she is recovering post surgery?
I, myself, explained to our surgeon how conflicted I was. I told her about all of the stories that I’ve read about on my Mums of CCAM Babies and Parents of CCAM babies boards. It’s amazing how different surgeons have such varying opinions on how to handle these cases. Some (mostly abroad) are very conservative and choose to never operate on the CCAM. Others, such as the surgeons at CHOP (Children’s Hospital of Philadelphia, which is the top hospital in the world for dealing with CCAMs) recommend removal of the CCAM as early as possible. One of my friends even had her son’s removed at 5 weeks old. Others have had theirs removed within a few days of birth depending on complications. This is a very heated topic on our boards and of course, every parent wants to believe that they have made the best choice. Everyone is an expert because their doctor knows best, isn’t that how it typically works. ;) The only thing we can do is trust the information we are provided, make a decision and never look back and wonder “what if”. After bringing the varying opinions up to my surgeon, she clarified that she is NOT one of those doctors who recommend NEVER removing the CCAM. She believes that if it is still present in six months, it needs to be removed. There is always the very rare instance that it might have been misdiagnosed and actually be a rare form of cancer which appears the same as CCAMs on CTs. For this reason, it needs to come out so that we can truly rule that out. However, she is also under the belief that if we wait six months, the CCAM may either resolve itself or it may have grown which would make its removal easier. She then continued to say that based upon the size of the CCAM, she does not believe that it will ever resolve itself. Contradictory, right?
Finally, I brought up the idea that the radiation from CT scans have been linked to childhood cancer. If we decide not to operate now, and have another CT done in six months, then what next? We can’t continue to do CTs and up the risk. She said that we would move to other methods of imaging such as MRIs. However, for MRIs, they are more difficult for children and take longer than CTs. We would definitely have to put her under and there is the chance that she might have to be intubated. Then we get into the risk of how many times do you want to put your child under anesthesia?
An outsider might view this meeting as good news. No parent ever WANTS there child to require surgery. Why opt to have the surgery now when she hasn’t displayed any symptoms in the first five months of life? Well, according to our surgeon, most chest infections occur between 12 months to 18 months so it’s not quite as likely that she will demonstrate symptoms during this first year. They might show up a little later and by that point, she will have damaged tissue from the infections. From my perspective, I'm terrified that every single cold that Kendall brings home is going to turn into a chest infection and then pneumonia. To me, I keep wondering why wait if you’re just going to take it out in six months anyway? The period of time that we will be waiting will actually occur during cold/flu season which in turn make her more susceptible to chest infections. By the time she has surgery in six months, will she have built up scar tissue that will make the surgery even more complicated? Additionally, how much more difficult will recovery be for Presley be in six months? Right now, she isn’t mobile. In six months, she will be crawling and possibly even walking. Will it be more difficult to keep her still while she is recovering post surgery?
I, myself, explained to our surgeon how conflicted I was. I told her about all of the stories that I’ve read about on my Mums of CCAM Babies and Parents of CCAM babies boards. It’s amazing how different surgeons have such varying opinions on how to handle these cases. Some (mostly abroad) are very conservative and choose to never operate on the CCAM. Others, such as the surgeons at CHOP (Children’s Hospital of Philadelphia, which is the top hospital in the world for dealing with CCAMs) recommend removal of the CCAM as early as possible. One of my friends even had her son’s removed at 5 weeks old. Others have had theirs removed within a few days of birth depending on complications. This is a very heated topic on our boards and of course, every parent wants to believe that they have made the best choice. Everyone is an expert because their doctor knows best, isn’t that how it typically works. ;) The only thing we can do is trust the information we are provided, make a decision and never look back and wonder “what if”. After bringing the varying opinions up to my surgeon, she clarified that she is NOT one of those doctors who recommend NEVER removing the CCAM. She believes that if it is still present in six months, it needs to be removed. There is always the very rare instance that it might have been misdiagnosed and actually be a rare form of cancer which appears the same as CCAMs on CTs. For this reason, it needs to come out so that we can truly rule that out. However, she is also under the belief that if we wait six months, the CCAM may either resolve itself or it may have grown which would make its removal easier. She then continued to say that based upon the size of the CCAM, she does not believe that it will ever resolve itself. Contradictory, right?
Finally, I brought up the idea that the radiation from CT scans have been linked to childhood cancer. If we decide not to operate now, and have another CT done in six months, then what next? We can’t continue to do CTs and up the risk. She said that we would move to other methods of imaging such as MRIs. However, for MRIs, they are more difficult for children and take longer than CTs. We would definitely have to put her under and there is the chance that she might have to be intubated. Then we get into the risk of how many times do you want to put your child under anesthesia?
Upon
explaining my conflicting feelings to her, the surgeon validated my concerns.
As a parent, she understands me not wanting to wait but also being nervous
about pushing for surgery. She did say that if we didn’t want to wait six
months, she would be willing to push up the CT for three months in order to
move things forward a bit. That’s a great compromise but I still feel like we’re
trapped in purgatory that we’ve been in since Presley was diagnosed at her 20
week about LAST November. Imagine waiting 17 weeks of your already hormonal
pregnancy not knowing whether or not your child was going to make it. Then,
when you go into get induced, waiting on edge to hear them cry which signifies
they’re breathing. Next, you have to wait for NICU to check them out and make
sure that they are okay to be in the room with you while you recover or whether
they’ll whisk them away to be cared for in NICU/PICU. Finally, when you get that
all clear, the doctor tells you, “Let’s wait six months and see how it goes.”
Now I’m at the point where I get to wait on the edge of my seat for an additional
three to six months just to get this ball rolling again. Will it ever be over?
