Pulmonary Sequestration or CCAM detected on 20 week ultra sound

[AprilM]

Hi. 

Dh and I went to the 20 week ultrasound today. Our joy and enthusiasm quickly took a turn for the worse when they had me transfer to another hospital for a more thorough ultrasound because the baby's heart looked a bit tilted to the right.

The second U/S showed a small mass in the baby's chest that the doctor referred to as either CCAM (Congenital Cystic Adnomatoid Malformation) or Pulmonary Sequestration. 

He said both are similar, and could get bigger, stay the same or dissolve on it's own. Anyone have any experience with this?

He said the prognosis for a health baby was very good and most babies do just fine. He did however mention that he wanted to keep an eye on it to be sure hydrops (fluid) didn't begin to form. He also said if the mass didn't go down on it's own, they would probably recommend pediatric surgery after birth, which scares that daylights out of me.

Any personal stories would be great.

Thanks

[proud2bemommy]

i have no experience with this but i am very sorry this is a mothers worst nightmare and i prey everything will be ok just keep your hopes u that it dissolves on its own good luck hun

[mambera]

Gosh, we need a tribe.  We've PM'ed already, but I'm just going to post in this thread so that any future moms who find it on a search can feel free to PM me.  FWIW you are the fourth MDC mama I know of who has had this issue (myself and then two others who have PM'ed me in the past year) and so far everyone's babies are completely fine.

[AprilM]

Originally Posted by mambera 

Gosh, we need a tribe.  We've PM'ed already, but I'm just going to post in this thread so that any future moms who find it on a search can feel free to PM me.  FWIW you are the fourth MDC mama I know of who has had this issue (myself and then two others who have PM'ed me in the past year) and so far everyone's babies are completely fine.

Hi Mambera! Glad you chimed in! Thank you once again for your encouragement through PM and through this post. Yes, let's DO start a tribe. I am so very curious to know if this is really more common/harmless than doctors think.

[AprilM]

I wonder if more folks are recently getting this diagnosis because of improved prenatal ultrasound. It's good to know that most babies who this is detected on turn out fine.

[AprilM]

It's OP again. Just wanted to update. We had our second ultrasound today. I believe I am 20 weeks. Anyway, not the news we were hoping for with the progression of our little one's lung mass. It has gotten bigger. Unfortunately. Fortunately, there are no signs of heart failure or hydrops. However they want to see me once a week now instead of once every 2 weeks, and they also want me to go for a special ultrasound for the baby's heart too......I think they called it an echocardiogram? ??? 

Anyway, I will keep this thread updated on our little man's progress just in case there are other moms out there dealing with this prenatal ultrasound diagnosis and looking for other cases.

We have faith that God is going to do as He sees fit with our little one...or should I say 'HIS' little one. Of course, we are praying and hoping for complete regession of the mass (which the doctor believes is an Intralobar Bronchopulmonary Sequestration), but at this point, this moment in my life, in my day, I can't say I am feeling much hope. I do however feel blessed to be able to carry this little person for as long as God wants me to.

It's hard to deal with this. I have a 3 year old (who is peaking through the terrible 3's) and I don't have a lot of patience. If I could, could I ask all your praying mamas out there to pray for our family as we go through this trial and tribulation. I hope we can be a testimony through all of this and not fall apart.

Till next time. 

[ericeira]

Hello,

Our baby was also diagnosed with pulmonary sequestration recently on 14 July 2011 (when I was 26 weeks).  We have been transferred to a specialist maternal-fetal hospital for regular monitoring of the mass (next ultrasound in 5 days), and will also have to have the baby there.  The mass didn't grow much between 26-28 weeks (our last two scans), but it wasn't picked up at our 19 week anatomy scan, so I imagine it grew quite rapidly between 19-26 weeks when it was finally picked up during an ultrasound being done for another reason (unrelated bleeding).  We were told that the mass (which is one third the size of the right lung) will definitely have to be removed after birth, with the operation occurring in the first year of life.  We will have to meet with a paediatric surgeon in the next few weeks regarding the operation, as if it needs to occur straight after birth, we will need to be filled in on what is happening etc.  Depending on how well the baby is breathing after birth, this will dictate how soon the operation needs to happen.  We were not told the mass could 'dissolve', but perhaps the mass on our baby's lung is too big already for that to be a possibility.  We were told our best hope is that it stops growing, or grows in proportion to the baby, so that it does not affect the heart function.  We were also told that because it is on the right side this is a little bit better than being on the left, as when they are on the left they push the heart off centre at much smaller sizes, as that is the side the heart also sits.  It's been quite a shock, and we feel fairly helpless at the moment with no way to help let alone control the growth of this mass.  If it grows too fast and looks like it will cause heart failure, we've been told the baby will have to be delivered early and it's chances of survival are obviously not as good when you combine prematurity with breathing and heart problems.  So we are just hoping that it doesn't grow any more, and we can carry as close to full term as possible (I'm 30 weeks now). 

I really hope your baby's mass dissolves like the doctors suggested it might, that would be an incredible outcome.  I just thought I would share our experience to now, as we feel very isolated at the moment, and hopefully sharing information will make everyone feel more aware of what is happening and what is possible.  

We were also told that most babies with this complication have normal lung function after the operation takes place, and go on to live normal healthy lives as older children and adults, which is reassuring.  I guess it's just getting the bub safely out into the world then to give it the best chance possible.

I'll post again after our next scan.

Take care...

[AprilM]

Originally Posted by ericeira 

Hello,

Our baby was also diagnosed with pulmonary sequestration recently on 14 July 2011 (when I was 26 weeks).  We have been transferred to a specialist maternal-fetal hospital for regular monitoring of the mass (next ultrasound in 5 days), and will also have to have the baby there.  The mass didn't grow much between 26-28 weeks (our last two scans), but it wasn't picked up at our 19 week anatomy scan, so I imagine it grew quite rapidly between 19-26 weeks when it was finally picked up during an ultrasound being done for another reason (unrelated bleeding).  We were told that the mass (which is one third the size of the right lung) will definitely have to be removed after birth, with the operation occurring in the first year of life.  We will have to meet with a paediatric surgeon in the next few weeks regarding the operation, as if it needs to occur straight after birth, we will need to be filled in on what is happening etc.  Depending on how well the baby is breathing after birth, this will dictate how soon the operation needs to happen.  We were not told the mass could 'dissolve', but perhaps the mass on our baby's lung is too big already for that to be a possibility.  We were told our best hope is that it stops growing, or grows in proportion to the baby, so that it does not affect the heart function.  We were also told that because it is on the right side this is a little bit better than being on the left, as when they are on the left they push the heart off centre at much smaller sizes, as that is the side the heart also sits.  It's been quite a shock, and we feel fairly helpless at the moment with no way to help let alone control the growth of this mass.  If it grows too fast and looks like it will cause heart failure, we've been told the baby will have to be delivered early and it's chances of survival are obviously not as good when you combine prematurity with breathing and heart problems.  So we are just hoping that it doesn't grow any more, and we can carry as close to full term as possible (I'm 30 weeks now). 

I really hope your baby's mass dissolves like the doctors suggested it might, that would be an incredible outcome.  I just thought I would share our experience to now, as we feel very isolated at the moment, and hopefully sharing information will make everyone feel more aware of what is happening and what is possible.  

We were also told that most babies with this complication have normal lung function after the operation takes place, and go on to live normal healthy lives as older children and adults, which is reassuring.  I guess it's just getting the bub safely out into the world then to give it the best chance possible.

I'll post again after our next scan.

Take care...

Hi Ericeira,

First, thank you so much for joining mothering just to reply to this thread and share your experience. It's always comforting to know there are others out there who are feeling similar to you. I know when we got our diagnosis, I was devastated. It felt like my world was crumbling, and my pregnancy has been full of worry. So I am here where you are now. You are further along than I, as I am only 25 weeks.

Just to share a few things from some other moms I have talked to, most everything has been very encouraging. There are actually 3 different moms I  I havmet here on mothering.com that all have completely healthy babies who have been through this, and none of the three babies have needed surgery after birth. Of course, this is not the case with all babies with this, but I found it very encouraging to hear this, as all the literature I have read online states that babies need surgery.

For what it's worth, when we found out about our baby, the doctor said, "I give your baby a 15% chance of needing surgery after birth". Now that the sequestration has gotten bigger, I am sure the docs think our baby will need surgery. But the other moms I met also had the same thing said to them, and although their babies mass's got bigger and grew with their babies within the 20-30 week period, their baby's sequestrations were undetectable at their 36 week ultrasounds and their babies did not need surgery. This outcome is what we are praying for. And I pray this same thing happens to your baby.

MMambera, who has replied to this thread has a ton of great knowledge on this subject, and I know she is always open to questions.

Please keep in touch and let me know how everything works out with your precious babe! Many prayers and may God bless you and your family in this trying time.

We have another ultrasound on the 18th, so I will update as well. Also feel free to PM me if you have any questions.

April

[AprilM]

Quick update on yesterday's ultrasound. The mass got a tiny bit smaller! And the doc said the blood supply going to the mass looks like it is weakening and there is even a spot where it appears to be starting to pinch off. Since the abnormal blood supply is what is feeding and growing the mass, it would be awesome if it died off, they then predict the mass would shrink up and go away. I am praying and hoping that this thing corrects itself before birth and the baby won't need surgery. 

Ericeira, do you have any other updates?

[Snugglebugmom]

Yay for the mass getting smaller! Prayers for you and your little one, and for all moms and babies that are facing this. 

[mambera]

Super news!!  hope you are feeling calmer mama

[AprilM]

Originally Posted by mambera 

Super news!!  hope you are feeling calmer mama

Hey old friend,

I am feeling a tad calmer. Would feel MUCH calmer if the thing would just disappear already! :-)

[ericeira]

Hi all,

AprilM - that is fantastic news!  I am very happy for you, it must be such a relief :)  Unfortunately we haven't had such great news.  Our scan last week showed that the mass is still growing, it was 10ml in volume at the previous scan, and has increased to 17ml in volume now.  But, the baby had also grown from around 1kg to 1.7kg in that time, so I guess you could say it is growing proportionately to the baby at this stage.  We and our specialist would obviously prefer that is stopped growing all together, but at this stage, the blood flow to it is still strong, and I am now nearly 32 weeks, so it doesn't look like there will be any reversal in it's progress. 

Anyway, we have another scan in 2 weeks, so we will see what happens then.  It's not a great outcome, but it's not the worst either (which would be that the mass grew faster than the baby and was affecting the heart), so we are very thankful for that at least.  In the interim, we have also found out I have gestational diabetes (which was a bit of a shock and yet another unnecessary complication!  But I am managing it very well with diet and exercise, and keeping all my blood sugar readings in the normal range), and we also found out that I am anemic, (so taking super strength iron tablets, which make me feel very ill and have a constantly upset stomach - but oh well!) so it's been a pretty full on month for us, but like I said, we are just thankful the mass is not outgrowing the baby at this stage, and hoping for the same or an even better outcome at the next scan in 2 weeks time.  I will write again after that. 

All the best for your next scan AprilM, it looks like things should carry on well for you now, what wonderful news :)

xo

[xjei]

Hi there

I am hoping to join this thread.  Our 3rd son was born at 36 + 2 spontaneous labour and suffered RDS and TTN at birth due to a rapid delivery (90 seconds vaginal birth) so no fluid escaped.  Long story short he went to NICU due to RDS and TTN and a chest xray showed a shadow at RL zone of right lung, plus a lot of fluid.  They thought possible base infection.  3 weeks old my baby suffered an acute life threatening event and I had to do CPR while waiting for an ambulance to get to our home, he was having obstructive apneoa's. I won't go further into detail with that he is ok.  3 more xrays showed the shadow, same size, same area and the specialist of 30 years paediatric work said he was pretty certain it was a pulmonary sequestration.  We had our 5th xray last tuesday and met with paediatrician wh ois head of dept and again shadow still there, no growth still same size.  We go for a CT scan soon to confirm, he is certain it is a pulmonary sequestration.  He said sometimes it is just a vein showing, but he doubts.  20 week scan showed nothing.  We see the paediatric surgeon soon to discuss the operation.  I am scared, he is nearly 4 months old and becoming well over time, no more apneoa's but still has a cough and the breathing rate has slowed.  We've been told once the operation is completed he will be healthy and normal, the cough will go and he will be able to do marathons if he likes.

I am more wanting to know what other parents and their children have gone through if anyone is willing to share please.  We were told he would have this operation between 9 - 15 months of age.  Only 2 people have this operation due to a sequestration per year here so it makes me nervous knowing how uncommon it is.  I have guilt as why him, why me, what did I do wrong.

We've been told it is a simple procedure and then I read it can be 5 or so hours?  I'm nervous for that.  The specialist was pretty sure it wasn't a CCAM he discussed with us how that usually grows and looks different on an xray and this was the same size.  One xray while he was in NICU showed it looked slightly smaller.  I do not know yet if it is inter or extra lobular.

Thanks for your time.

[ericeira]

Hello, Sorry for the delay - it's been a whirlwind 3.5 months! Our daughter Alela was born at 33.5 weeks by vaginal birth, no drugs or intervention, spontaneous labour.  The day before she was born we had another scan for her PS which had finally stopped growing for the first time!  When she was born, she had no breathing difficulties, it was as if the sequestration wasn't even there, so incredible, especially for being so premature as well.  We had a very long, hard and heartbreaking 4.5 weeks in the NICU, then three different SCUs while she learned to suck at the breast, gain weight to hold her temperature, get rid of her jaundice and eventually learned to stop holding her breath while she slept!  But those are normal premature complications, the sequestration has caused her no difficulties thus far.  In saying that, it is still there as shown by xrays, and we met with the surgeon last week and booked her CT scan to asses whether it is intra/extra and/or CCAM in April.  If it is CCAM I imagine they may remove it earlier, if not, then the plan is to remove it when she is 18months old, unless she has any complications in the meantime, as we're told it can be a source of infection - i.e. if she gets a bad cold she is more likely to get pneumonia, so if that happens they said they will remove it earlier.  You can imagine my relief that we were able to establish breastfeeding then to help with her resistance to that kind of thing.

Anyway, I just thought I would let you all know how things went, and wish everyone else best of luck from here.  I'll keep checking back to see how everyone progresses as it seems to be a very uncommon complication, so I am interested to see how your operations go.

Merry Christmas

xo

[ericeira]

Hi xjei,

Wow, sounds like quite a journey, I'm glad to hear everything is going better now for you and your family.  As I mentioned in my previous post, we're due to have our CT scan in April, so will know more then.  Have you had yours yet?  How did it go?

It would be great to keep in touch as it is quite a scary situation, especially all the variables, whether it is CCAM or not etc.

One thing our surgeon did say was that if it was intralobar, they would remove which ever lobe it was in place of, and possibly the one above it too (our daughter's is on the right near the lower of the three lobes), where as if it is extralobar they would just need to remove the sequestration and not any of the lung hopefully.  

Anyway, keep in touch - and best of luck!

xo

[Cody Hoyer]

     Our son Logan was born may 21, 2011. At the targeted ultrasound that was done at wk 20 we were told he had something extra there and reffered us to another doctor. It was confirmed he had either a CCAM or Pulmonary Sequestration. This was quite devastating to us not knowing what the end result  would be and having the entire second half of the pregnancy left. After we recieved this news we suddenly had a doctor appointment every week to monitor the growth. We spent a lot of time on the computer trying to find out all the info we could and read other peoples stories about dealing with this. As the weeks went on the growth was begining to shrink. We were told they didn't anticipate any problems with the delivery but we should expect to have surgury at some point to remove the mass because there is a small chance it could become cancer. By the ninth month they were unable to see it in the ultasound anymore. When my wife went into labor and we were at the hospital for the delivery everything was fine until she was 3cm dialated. His heart rate would drop everytime she had a contraction. They decided to go ahead with a caesarean. When they pulled him out and we heard that first cry our eyes immediatly filled with tears.They quickly realized there was a problem and rushed him out of the room and I was right behind them. He was unable to breath on his own. The reason his heart rate was droping was because his cord was in a knot so every contraction pinched it closed. It was about 2 hours before a doctor came to talk to us about our son. He said that they had to give him surfactant to help his lungs expand but his oxygen saturation was really low. Also for some reason that the doctor couldn't explain he was severly anemic. He had to be given 2 blood transfusions but they couldn't see any signs of the CCAM in his chest. He stayed in the NICU for a week before we could take him home. He had to be on oxygen until he was about 6 weeks old. The doctor thinks that the CCAM was destroying his blood cells and thats why he was anemic.I am happy to report we have had no problems since. He had a scan done at his 6 month check up with no signs of the CCAM. While this experience was horrible to deal with I hope it helps to inform and prepare other people of potential problems they may face after delivery. While it isn't common for them to dissolve on their own It is possible.

[Rachel111]

Hi all, 

Just searching google for info and i found this page...so happy to read it and see that there's a chance it may disappear...i'm now 24wks preg and at my 20 wk scan they said there's some sort of pulmonary sequestration - didnt really get what the consultant was talking about which is why i've been searching google. It sounds like the mass in my baby is quite big already - it's about 16 mm and i'm only 24 wks - but the consultant did say my baby was a big baby so TG it doesnt seem to be affecting baby's health or size and heart etc all seems normal...so now have to hope and pray that the mass gets smaller - i didnt realise that was even a possibility..

Ericeira - thanks for all the updates they're really useful - now that you've had ur baby maybe you would know - how soon after birth do they do the operation - what does it depend on? because we may go out the country when the baby is a month old and we're just wondering if this whole business is going to set us back or if it can wait until we get to where we're going and do the operation there.....?

[SilverMoonMama]

Sending you lots of shrinky mass vibes, if its ok with you i wold like to have my mother add your to her reiki groups healing prayer list