Poor Prognosis Pregnancy (fetal hydrops & down's syndrom
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Thread: Poor Prognosis Pregnancy (fetal hydrops & down's syndrom

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    Default Poor Prognosis Pregnancy (fetal hydrops & down's syndrom

    I am starting this journal about 2 weeks after this all began. I am now 19w5d pregnant. Two weeks ago, I went for my quad screening analysis. The dr. called me 3 days later and told me my results came back 1 in 10 odds for Downs Syndrome. I was pretty upset at the time, but knowing there are a lot of false positives with this test, I was hoping for the best, and thought that the worst outcome at this point would be that the baby has downs.
    We went in for a level II u/s a few days later (@ 18w4d pregnant). It was then that the perinatologist told us the news. Our baby has a condition called fetal hydrops, which is extensive edema and fluid accumulation in the abdomen and lungs. He said the condition looked quite advanced, and doubted the baby would survive much longer. I was devastated. My DH and I were not expecting this at all. We told him we would like a second opinion, so he referred us to another hospital, which would be better equipped to handle a baby with such a condition. We went to see the second opinion peri. They did very extensive level II u/s (took 2 hours), and also did an echocardiogram of the baby's heart. They found no structural abnormalities with her (we found out it's a girl), and also the echo. of the heart was perfect. Unfortunately, when there isn't an obvious cause, such as a structural abnormality, it is almost impossible to treat. The dr. seemed to suspect it is due to a chromosomal abnormality such as Turner's syndrome. He said it didn't look like down's, b/c they found no abnormalities typical with down's, and the baby's heart was fine. He confirmed the first doctor's prognosis that the hydrops is quite advanced and the baby would most likely live no more than a few more weeks. Of course we were then faced with the decision of whether or not to terminate or continue the pregnancy. Without going into any ethical debates, I'll just say that we decided the best decision for us at this time would be to put the situation into God's hands and let nature take it's course. I am told the baby is not in any pain or discomfort. The time she has now is the only life she will ever know, so I guess all I can do is let her enjoy it for as long as she can and pray that she is comfortable. Although amnio is probably something I never would have considered, we decided to have it done, in the event the hydrops is caused by a virus, we would need the results of the amnio to confirm and possibly treat.
    The procedure was very uncomfortable, and I doubt I would ever have it done again. It lasted all of about 45 seconds, but I was hating every second of it. We requested the Fish test, in order to have preliminary results in a few days. Two days later (yesterday), I got a call from the genetic counselor. The baby does indeed have down's syndrome. Although I was very upset when hearing this, a part of me was a little relieved, because at least now there is a definite cause for the hydrops. I was told hydrops is frequently seen in baby's with downs. If they weren't able to diagnose the cause I think that would have drove me crazy. In all likelihood, I could conceive again, and the baby would not have down's, or hydrops. I am 34 now, so I am a little older. I guess I should have started much earlier. This would have been our first. I don't have another appointment until next week. At this point it is basically just a waiting game. When the baby dies, it will be like a normal delivery. When she dies, they will induce labor and I will have to deliver her. I can not even imagine what that day will be like. A part of me wants her to stay alive as long as possible, but then another part hopes she doesn't hold on for too long, as I know it will be emotional torture walking around and going to work every day being pregnant and knowing I will never actually be taking her home.

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    The genetic counselor called yesterday with the final results of the amnio.
    The down's syndrome was confirmed. the only good news is that it is not the type that is hereditary. I was told it is extremely rare for Down's to be hereditary, but they are able to determine the hereditary type by the chromosomes. So, luckily the chromosomes do not appear to indicate this rare type of hereditary down's. The amnio results also confirmed that there are no viral infections, which sometimes cause hydrops. I have my next ob appt. in two days. This is the appt. we originally had scheduled as our "big ultrasound" appt. If we hadn't had the quadruple screening test done, at this point we would have no idea anything was wrong. I would have been so excited for this appt. as my DH would be there with me and we would have found out the sex. Unfortunately instead of being the exciting "big u/s" appt. everyone looks forward too, it's turning into a dreaded "let's see if there is still a heartbeat" appt. I'm now 20w5d pregnant. I definitely look pregnant. I still don't feel the baby move though. A few times I thought I did, but nothing definite or regular. The dr. said I have an anterior placenta, which makes it harder to feel, also, I think the placenta is thickened b/c of the hydrops.

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    I'm now 21 weeks pregnant.
    We went for our appt. yesterday to my regular ob. They did an u/s. The baby is still alive and growing on target for her age. Her h/b was 150. Her legs measured somewhat smaller, which is typical with down's. It looked like to DH and myself that the fluid in in the abdomen was much less than before. It also looked like much less fluid in the lungs too. The edema in the skin still looked pretty severe. The dr. was unable to compare though, because we had both level II u/s done at two different perinatologists. We go on Tuesday to the peri. for an u/s. We will be able to get a direct comparison then for the hydrops/edema/growth. Every time we go for an u/s she is so active - I can't believe I still can't feel her move. The dr. seems to think I will definitely start to feel her movement very soon. It is mostly due to the fact that my placenta is anterior, which makes it harder to feel. I gained 8 pounds in the last 4 weeks. the dr. said as long as it is gradual it is ok, but to watch for a sudden gain (such as a few pounds overnight) which could indicate hypertension. DH bought me a blood pressure monitor to watch for this also. I am at risk for developing "mirror syndrome" in which I will "mirror" the condition of the baby and develop severe edema and hypertension. If this condition develops and is in any way a threat to my life, they will induce labor. My ankles have been swelling up for the last ~ 2 weeks, but my BP has been fine (~ 120/70). We sat down with the ob after the u/s. He told us if baby dies before ~ 28 wks, that he will deliver at at our regular hospital. If, however, the baby looks like she is going to hang on longer, we will have to make arrangements to deliver at another hospital, which would be more equipped to handle the baby if born alive. We will also have to decide to what extremes do we want to try to save her. We don't have to make these decisions now, but it is something we will have to start thinking about soon. DH and I both agree that we we would certainly want to have the baby with down's than not have her at all. I left the appt. feeling somewhat happy. I was glad to see her alive and growing, and at least to have spent that time with her. We got a few more pictures of her too.

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    Today I'm 21w3d along.
    I went for an u/s at the peri. today. The baby measured exactly what she should for her age. Her h/r was 141. It has been 2 weeks now since my amnio. The doctor confirmed that the hydrops definitely has improved. There was no fluid in her abdomen, and fluid was only present in one lung (before it was in both lungs) and was much less than before. He said the baby appears to be reabsorbing the fluid. At my first peri. appt. they told me she would live no more than days or at the most a few weeks. That was over 3 wks. ago and now the hydrops has actually improved. Today the dr. said it looks like she will probably hang in there for a lot longer than that. The baby was very active today during the u/s. I felt a definite kick for the first time. I saw on the u/s when she gave a big kick and felt it! Then, when I came home and was taking a bath I could definitely feel her too. I'm very happy that I can Finally feel her move! I got some more pictures to take home. I really enjoyed the time I had watching her move around so actively on the monitor. I know the outlook is still grim, but I can't help but to have a glimmer of hope that maybe the hydrops could resolve and she could live. I told my mom today for the first time that the baby has down's. I hadn't told anyone up until this point. I've known for ~ 2 wks. now, so I am over the shock of it, but she seemed pretty suprised/shocked. She felt really bad. I felt like I was the one consoling her, telling her it's ok, I can handle That. After being told my baby is going to die, down's syndrome is the least of my worries. I think we will hold off on telling other people for now. It's hard enough trying to explain the fact that my baby probably won't survive to birth and will most likely be stillborn, let alone getting into the fact the baby has down's. A part of me feels like people won't respect my baby as much if they know and might think...well maybe it's for the better if the baby doesn't live... and I don't want people thinking that about my baby.

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    Today I'm 21w3d along.
    I went for an u/s at the peri. today. The baby measured exactly what she should for her age. Her h/r was 141. It has been 2 weeks now since my amnio. The doctor confirmed that the hydrops definitely has improved. There was no fluid in her abdomen, and fluid was only present in one lung (before it was in both lungs) and was much less than before. He said the baby appears to be reabsorbing the fluid. At my first peri. appt. they told me she would live no more than days or at the most a few weeks. That was over 3 wks. ago and now the hydrops has actually improved. Today the dr. said it looks like she will probably hang in there for a lot longer than that. The baby was very active today during the u/s. I felt a definite kick for the first time. I saw on the u/s when she gave a big kick and felt it! Then, when I came home and was taking a bath I could definitely feel her too. I'm very happy that I can Finally feel her move! I got some more pictures to take home. I really enjoyed the time I had watching her move around so actively on the monitor. I know the outlook is still grim, but I can't help but to have a glimmer of hope that maybe the hydrops could resolve and she could live. I told my mom today for the first time that the baby has down's. I hadn't told anyone up until this point. I've known for ~ 2 wks. now, so I am over the shock of it, but she seemed pretty suprised/shocked. She felt really bad. I felt like I was the one consoling her, telling her it's ok, I can handle That. After being told my baby is going to die, down's syndrome is the least of my worries. I think we will hold off on telling other people for now. It's hard enough trying to explain the fact that my baby probably won't survive to birth and will most likely be stillborn, let alone getting into the fact the baby has down's. A part of me feels like people won't respect my baby as much if they know and might think...well maybe it's for the better if the baby doesn't live... and I don't want people thinking that about my baby.

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    22w 6d
    I went for routine appt. at my regular ob. I saw one of the different dr.'s there who I have never seen before. Baby's h/b was 150 and sounded just as strong as ever. No u/s today. Dr. said my uterus feels right where it should be for how far along I am. I have been getting visual migraines frequently this past week. Dr. said this is normal to increase during pregnancy due to hormones and stress. Dr. couldn't comment on status of hydrops. We will need to wait 2 more weeks for next u/s. At that point we will re-assess birth plan - possibly arrange to deliver elsewhere. I thought he seemed pretty optimistic though. He said the baby has defied the odds so far. I spoke with a nurse at the hospital who deals with couples in these situations. I feel better now that I have spoke to someone there, so I have a better idea what to expect if the baby dies and I have to go in to get induced.

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    24w5d
    I went for another u/s at the perinatologist. Good news. The hydrops has mostly gone away. There was no fluid in the abdomen or lungs. The baby still has edema in the skin, but dr. thought it had gone down significantly. He seemed very optimistic. He said there was some fluid in the kidneys, but it was minimal and nothing of concern. He seemed to think that if things progress the way they have been, that I wouldn't have to arrange delivery at an alternate hospital. We go in three weeks for another fetal echocardiogram. Although the echo. was normal when they first did one, it is routine in this type of case to repeat echo. later in pregnancy. As far as the baby's overall prognosis, the dr. now says she has about 25% probability that she won't survive. That's a major change, considering they gave her nearly 100% probability that she wouldn't survive when the hydrops was first diagnosed. She is still growing and measuring on target for her age.

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    26w2d
    I went for routine check-up at my regular ob on Friday. Baby's hb was 150-160 and sounded very strong. I did good with the weight gain this week too. We had a long conversation regarding whether or not to arrange delivery at alternate hospital. He seemed to think it would be a good idea, b/c even if hydrops is still not present, and the fetal echo. shows not heart defects, baby's with downs sometimes have other problems that we may not detect before birth. It would be easier to transfer baby while she is still in me, then after I deliver, if there are any other problems. I fully agree and want to make sure I deliver in whatever hospital is the best equipped to handle any situations that could arise. Although I don't like the idea of changing doctors at this point, it is in the best interest for the baby. The other hospital is further away (~ 40 minutes), but they have a very good reputation for labor & delivery, and are fully equipped with NICU and the best pediatricians. My dr. is going to call me today and further discuss and come up with a plan.

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    27w6d
    We went for a repeat fetal echocardiogram yesterday. Good News. Like the first fetal echo. we had at 18 wks, they found no defects. The peri. said there could always be something minor that the fetal echo. doesn't pick up, such as a small hole in the heart, but there are no major problems that they can detect. We are very happy, as they say about 30-50% of baby's with down's are born with a heart defect. Today was the first u/s we've had in 3 wks. There was still no evidence of the hydrops coming back. She still has some edema in the skin, but it appears to still be going down. The peri. said that is usually the last place for the fluid to disappear from. Of course we are still trying not to be overly optimistic b/c we know the hydrops can come back. She is still growing according to plan. They estimate her to now weigh 2 lbs 12 oz. I further discussed with my ob about deciding whether or not to switch my delivery hospital. He talked it over with the peri. team and they basically said that if the hydrops remains resolved and there is no evidence of any other defects that I can deliver at my regular hospital. I do still have the option of switching obs and arranging delivery at an alternate hospital (I have my choice of 2), which have a higher level NICU. I haven't made the change yet, but if I go into preterm labor, or have any other complications pre-term, they will send me to the alternate hospital anyway. I have an appt. with my regular ob next week so we will discuss again. I have been reading up on downs syndrome and trying to educate myself as much as possible. There is so much to learn it can be overwhelming. We still haven't told anyone except our parents about the DS.

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    29w2d
    I had 1-hr. glucose test, routine bloodwork and Rhogam injection last week. I passed the glucose test and my bloodwork came back borderline low red-blood count. My dr. said he was not concerned, just to keep taking my vitamins and try and increase my iron intake. I had to go to the Labor & Delivery dept. to get my Rhogam injection (because I have Rh- blood). I found going to L&D to be kind of scary and upsetting.
    As I was wallking past the nursery and birthing rooms, a feeling of anxiety came over me and I felt like crying. I think maybe the reality of everything was really hitting me. Not that I think it hasn't hit me before this, but knowing that whatever the final outcome of the pregnancy will be, it will be happening soon was very scary. I got my injection and got out of there fast.
    I went for a routine appt. at my ob on Friday. Baby's h/b sounded strong (150). I told my ob that I decided to make the switch in dr's to arrange delivery at a better equipped hospital. I have been really back and forth with this, as there are many pros and cons to both situations. He was very supportive and admitted that he would do the same thing if he was in my situation. He is going to talk with the peri's at the other hospital (who I've been seeing) and will get a few references from them and call me back. I go for another u/s at the peri. next week.

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