Originally Posted by ericeira
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.
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.