Anyone know about cystic hygroma?

[maestramommy]

One of my GF is 12.5 weeks along. They did an u/s and found a large amount of fluid around the baby's neck. They call it cystic hygroma, and it may or may not be linked to chromosomal abnormality. My friend is pretty devastated, since they told her the outcome is termination. However, she and her Dh are devout Catholics, and will not consider it. So they are proceeding with the pregnancy. At 20 weeks they will find out the chances of survival, since the amount of fluid will either increase or decrease. They will also be doing everything they can to ensure the right medical care when the baby arrives, should it make it to term.

Has anyone ever heard of this? What are the baby's chances, and if she/he does make it to term, what are the possible outcomes?

I'm so heavy hearted for my friend. She has 2 dd's already, but each child has been preceded by a m/s, and she really had high hopes for this one. The pregnancy has been really stressful from the beginning, with low progesterone levels.

[mamaoftwins]

Melinda, prayers for them.

Here is some good info from one of my genetics websites:

http://www.genetics.emory.edu/pdf/Emory_Human_Genetics_Cystic_Hygroma.PDF

Prognosis:
In some situations, a cystic hygroma can be present in a healthy baby. If a chromosome abnormality
is not found in the fetus, the outcome is generally better than for those who do have a chromosome
abnormality. If a cystic hygroma is an isolated finding that resolves around 18-20 weeks gestation
and the fetus has normal chromosomes, the outcome is good for 54-80% of these cases. In cases
in which an isolated cystic hygroma does not resolve by 20 weeks gestation, 2-9% have a good
outcome. Overall, there is generally a poor prognosis associated with the prenatal finding of cystic
hygroma. Studies have indicated that smaller cystic hygromas are more likely to resolve.
Oligohydramnios (not enough amniotic fluid) or polyhydramnios (too much amniotic fluid) predicts a
poor outcome. Hydrops occurs 22-76% of the time with a cystic hygroma and is almost always
associated with miscarriage or fetal death.

[maestramommy]

Thank you.

[BabyMine]

If they are interested in getting the chomosomal anaylsis done they could do the CVS test. It is an idea although your friend is almost at the cutoff point.:hug: Prayers and positive thoughts comming her way.

http://www.babycenter.com/0_chorionic-villus-sampling-cvs_328.bc

[maestramommy]

If they are interested in getting the chomosomal anaylsis done they could do the CVS test. It is an idea although your friend is almost at the cutoff point.:hug: Prayers and positive thoughts comming her way.

http://www.babycenter.com/0_chorionic-villus-sampling-cvs_328.bc

oops, sorry. Forgot to mention that they will be doing this.

[Gena]

My son, who will be 5 in a couple of months, had a cystic hygroma (CH) in utero. It was discovered during an ultrasound we had at 9.5 weeks for size and dating. Our doctor told us that best case, it would resolve by mid-pregnancy, worst case the baby had a condition that was "incompatable with life". We were told that Turner Syndrome (XO) was a likely cause, but other chromosomal abnormalities were possible. Our doctor referred us the the high-risk pregnancy unit at the local hospital and we were scheduled for a series of Level II ultrasounds.

We were devastated. Since we are also Catholic, we did not consider termination. We refused amnio and CVS testing because we were not comfortable with the risk of miscarriage and the results would not change out decisions. We said prayers to the Blessed Mother, to St. Anne (patron of mothers and childbirth), and St. Gerard (patron of pregnant mothers and safe delivery). Most parents pray for a healthy child. We prayed for a living child and the strength to handle whatever disabilities or complications that may come. We cried a lot.

At our 12 week level II ultrasound, there was still some fluid behind the neck. But there was no sign of fetal hydrops (fluid in the chest) and we knew this was a good sign. By the 20 week ultrasound, the CH had resolved. It was gone. We also learned that we were having a boy, which ruled out Turner Syndrome. There were no soft markers for other chromosomal problems.

DS was born healthy, 10 days late, and nearly 8 lbs. We were overjoyed.

We have since learned told that a CH that resolves on its own and is not accompanied by chromosomal abnormalities is usually the result of delayed development in the lymphatic system. We believe that this is the case with our son. No one really knows how often this happens, since many women have only the 20 week ultrasound, which would be after the situation is resolved and there is no sign of the earlier abnormality. It may be more common than we realize.

DS does still have a small, flat mass on the back of his neck. It has always been there. Our doctors have looked at it believe that it is a dermoid cyst (fluid and cells trapped under the skin). When we have asked if this is related to the CH, we have gotten answers ranging from, "I don't think so" to "Possibly". Since the mass is small and benign, we do not feel the need to have it surgically removed, which would be the only way to know for sure.

We sometimes wonder whether the CH played a role in our son's autism, which we believe he was born with. There is no scientific evidence of a relationship between CH and autism, but there are also no studies. Even if the CH is not medically related to the autism, I think the two conditions will always be linked in our minds and hearts. After all, we asked God to let our baby live and promised Him that we would accept whatever challenges this child might face, and God has held us to our word. We thank Him for this daily. Our son is an extraordinary little boy, a miracle, and a blessing.

I am not a medical expert, so all of this information is simply my own experience, what I have read, and what I have been told by our doctors. I hope it helps.

I will keep your friend and her child in my prayers.

[maestramommy]

Gena, thanks for sharing your experience. It gives me hope for my friend.

[daisyd]

Melinda, my S-I-L had a similar problem. She was given the likely-chromosomal-abnormality news but in her amnio the report showed a healthy baby. It was a very difficult experience for the whole family but I'm happy to say that my 1.5 yr old niece is a vivacious and healthy child - our miracle and the apple of our eyes! Prayers and PT for your friend. Hope she has a miracle too.

Daisy

[lablover]

My friend's baby was diagnosed with this around 9 weeks or so. She was given all the stats and scared to death that the baby may not make it. She opted for a CVS around 12 weeks which came back normal. I remember there were still some things they were worried about and I think the doctors also said dwarfism was a possibility. Her DD was born perfectly healthy and is now 2 1/2, with normal growth.

I hope your friend experiences a similar outcome.

[JenaW]

I'm saddened that the doctors jumped right to termination, since as others have pointed out, the outcome is not always bad. Unfortunately, it CAN be though. Since they are doing the CVS, hopefully they will get some more definitive results sooner than the anatomic scan. However, not all cases of hydrops fetalis are related to chromosomal abnormalities, and a chromosomally normal fetus does not rule out potential complications from the CH. I wish I had some better news for you. I will definitely be praying for your friend and her baby. Please keep us updated.

J

[maestramommy]

I'm saddened that the doctors jumped right to termination, since as others have pointed out, the outcome is not always bad. Unfortunately, it CAN be though. Since they are doing the CVS, hopefully they will get some more definitive results sooner than the anatomic scan. However, not all cases of hydrops fetalis are related to chromosomal abnormalities, and a chromosomally normal fetus does not rule out potential complications from the CH. I wish I had some better news for you. I will definitely be praying for your friend and her baby. Please keep us updated.

J

Jera, this was consistent with what I read in the link provided above. In fact the info states that the risk of chromosomal abnormality approaches 50%. Does that mean that almost 50% of cystic hygromas are due to chromosomal abnormality? I have a little trouble understand the language. In any case, I agree that it's sad if docs do tend to jump termination, which in my friend's case, seemed to be what happened.

Thanks for all the prayers. I will be getting updates, so I will let you know.