Please remember that CLE is not typically genetic. Most of the time, it happens spontaneously. I hope this brings you as much comfort as it did me.
My Ob/Gyn referred me to a genetic counselor and we also had a level 2 ultrasound to check the health of baby #3. I never updated you on the status of that meeting because we ended up nowhere.
On the ultrasound, our third child's lungs looked perfectly healthy, but since CLE is often not able to be diagnosed in the womb, this wasn't very reassuring to us.
The meeting with the genetic counselor was even less reassuring. CLE is rare, and our counselor wasn't as informed as we'd hoped she'd be. She said that it's never genetic. I knew better than that. On our CLE parents Facebook page, there is a woman who needed a lobectomy for CLE as a baby, and her daughter required one as well, due to CLE. Additionally, my pediatrician showed me one of his medical textbooks that stated that rarely, CLE is genetic, and that fathers and sons have been known to have CLE.
I left our meeting feeling discouraged at the lack of answers as well as the lack of information. However, when we ended our discussion, the genetic counselor said that she would look into CLE further and call me back.
Fifteen minutes later, my cell phone was ringing.
The genetic counselor said that a pediatric geneticist wanted to meet with us, and she scheduled an appointment for our one year old at Arkansas Children's Hospital.
We had our appointment last week.
In the months that have lapsed, I have given up on anyone being able to completely reassure me that all future babies will be healthy and free of CLE. Statistics, however, are on our side. Additionally, my lungs are fine, as are my husbands. Most likely, our son's CLE was completely sporadic. So going into this appointment, I expected to gain very little information.
The genetic counselor told me that at the very least, they would take blood from Andrew with the goal of creating a DNA microarray. One day, should more information on CLE be available, they will have his DNA to study and compare. Every year, exponentially more information is available in the area of DNA and genetics. I decided to approach our appointment with the interests of science in mind, knowing that we would probably get few reassurances.
Here's what our pediatric geneticist had to say.
There are three explanations for CLE:
1. It's sporadic and simply happens. This is, by far, the most common cause.
2. Genetic: A mother or father passes it on to their child. This happens very rarely, and only a few cases of parents & children both having CLE exist.
3. A Genetic Disorder causes it. This was completely new information for me. The doctor said that there are a few very rare genetic disorders that are connected with CLE. The reason he wanted to see us was so that he could do a thorough examination of Andrew and see if my son has any of these disorders. The doctor said "I wanted to see this little guy in person." Since our appointment has been scheduled for months, I'm really glad that I didn't know he would be looking for a disorder, or I would've had one more thing to worry about.
The doctor was wonderful with Andrew. He had an old fashioned leather doctor's bag that was full of toys perfect for my 17 month old. My toddler, who was stripped down to his diaper, didn't want to be poked and prodded by the doctor, but the toys provided a great distraction, and the doctor was one that had been around kids enough to know how to poke and prod without eliciting too many screeches from a touchy toddler.
The conclusion? My son is too healthy and too perfect to have any of those genetic disorders.
Any parent would love to hear this about their child, but one whose child had half a lung removed as a newborn really loves hearing such a positive statement about their child.
I wish I could tell you which genetic disorders he was looking for, but when he rattled off the name of one of them, I had no frame of reference to be able to remember it. I have no medical background, so it's all Greek to me.
The doctor said that the specific genetic disorders he was looking for have physical manifestations that would've been visible upon examination. Blood work is routine at a genetics appointment, but there was no need to take Andrew's blood for a DNA microarray or any other purpose, because the doctor was completely certain that Andrew is fine.
As for my future children and even grandchildren, the doctor said that I would have a better chance of winning the lottery than having another child born with CLE. Our pediatrician wants to do an x-ray of our baby's lungs a few weeks after birth, for precautionary measures, but the genetic doctor says that it's really not necessary.
Ultimately, I still have no reassurances that this isn't genetic, except that statistics are on our side. You can trust statistics if you like; I feel like God has given me a peace on this issue. Either our child's lungs are fine or they're not, and if they're not, He'll carry us through that journey, just like he did with Andrew.
If you want more information on the different causes of CLE, here's a website that my son's surgeon emailed to me. It doesn't have the information about the genetic disorders. I think those causes are so rare that there's little reason to be concerned about them.
Isabelle and Andrew enjoying the summer.
Hi Gabrielle,
ReplyDeleteThanks so much for sharing your experiences with Andrew's CLE & your subsequent pregnancy. Was curious as to how your new baby is?
My son Max (now 10 months) was finally diagnosed with CLE after my constant assertions that his breathing was irregular & laboured were finally heeded, It was found that 1.5 lobes of his right lung were affected. His treatment has been conservative since the initial discussions regarding surgery were halted as Max seemed to be coping ok by himself. Although, he has had to be hospitalised at 6 months when a simple cold brought home by his older sisiter quickly turned into bronchiolitis & he was unable to cope without oxygen.
He is thriving & his development most certainly has not been affected, thank God.
But I am curious as to know if you found that Andrew, in later months, (8 - 12 months)seemed to feed more than other babies his age? This seems to be the case with Max, and we often wonder if it is because he is still expending way more energy than non CLE babies in order to just breathe. Despite his constant feeding, Max is of average weight, so we figure he must be burning it off somewhere. (Despite having 3 solid meals & snacks per day & 3 formula bottles, he still has 2 large bottles throughout the night...)
He is still under the care of Respiratory specialists, although his check-ups are quarter yearly now. I was just wondering how old Andrew is now? And how much of his lung has regenearated?
I have looked for the Facebok page as mentioned above but can't seem to find it & was hoping you may be able to direct me to this?
As I'm in Australia and you are the first parent to report their experience with this condition, I was hoping we would be able to stay in touch, compare notes and fill me in on Andrew's progress over the years?
My name is Albany Baccini & my email is
albany_baccini@hotmail.com
Thanks again for sharing your experience & look forward to hearing from you in the future,
Kind Regards to you & your family,
Albany Baccini
Thanks for commenting, Albany! I'll send you a personal email in response so that we can keep in touch, but the short answer is that yes, Andrew is doing wonderfully well. As far as eating more goes, he's always been a good eater, and I don't know that I would attribute it to the lung issues. And keep in mind that he did have lung surgery, so he doesn't have to work harder to breathe now. I also was breastfeeding, so there wasn't really a way to quantify how much milk he was taking in. I just know that he ate a whole lot of solid foods at this age!! Again, I'll email you and we can dialogue back and forth. I've also sent you a friend request on facebook so that I can add you to the CLE group. Thanks!! -Gabby
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ReplyDeleteI was looking for copd treatments for my husband who was 72yrs old, my husband has COPD and cancer, his condition was very critical which i was very afraid that will not survive it.
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