Second Loss

PJC · 01-18-2007, 02:07 AM

Hi everyone,

Some of you might remember me if you've been around here a couple years. A month ago we also lost our baby boy to hydrops. He was stillborn (nothing to do with PCOS). I just wanted to share our story as I'm trying to deal with another loss. I'm going to copy and paste what I had already written to one of the groups I post with on bbc.

Hi Ladies,

I just wanted to let you all know that baby Matthew Joseph was delivered Stillborn December 17, 2006 at 3:40 am (Sunday). We're pretty devastated at losing another baby so far into the pregnancy. We were one day shy of hitting the 30 week mark. I was so excited because we were (when I went in the hospital) 4 weeks past Anna's delivery and was expecting this baby would come home with us. I had just purchased and assembled his stroller (and carseat) and had a big box of baby pj's and itty bitty socks waiting for me when I got home from the hospital. I had ordered them online from Kohl's (on sale) shortly before I went into the hospital. I had been buying diapers each week as they went on sale and as I had coupons. The coupons slowed down, and wouldn't you know since I've been home I've gotten two mailings from pampers and a free sample and coupons from Huggies. Once again I have to put them away for another baby...sniff...sniff...

I went in on December 6th for my routine (every two week) u/s and doctor's appt. When I got to u/s the sonographer noticed fluid around Matthew's chest cavity--in his lungs and around his heart. His whole body would eventually be swollen and full of fluid. He had a condition called "hydrops" which has a very grave prognosis most of the time, even under the best of circumstances. It is basically fetal heart failure, which could have many causes.

The doctors tried their best to find the cause of the hydrops, in an effort to treat it, but so far have not been able to. I had two amnios, a cordocentesis (they took cord blood to check for anemia in the baby in utero) and also did a blood transfusion on him while he was in utero. We were sent to Children's hospital (which has a bridge from Brigham and Women's) for fetal echocardiograms to see if his heart had some sort of defect. During this whole time we knew his chances of dying inside me were pretty great. I was in the hospital for almost two weeks.

So far the only things we know are that his genetic testing came back normal (what had come back by that time), and I had tested + for cmv virus, which I had also tested + for between pregnancies. My doctor was not really convinced that was the cause either. They were never able to see his entire heart on u/s or echo (meaning the small intricate workings of his heart), but what they could see looked normal. The doctors were stumped, especially since I originally came in with cervical issues and my cerclage and cervix were holding up like Fort Knox. I was apparently the subject of all the doctor's meetings and my doctor had not only his team of residents and fellows working on it but also all the other attending ob's and a team from the NICU. They were all trying to figure out how to handle such a difficult situation. They knew if they took him out now (at 28 weeks) he would not survive. It's not a very hopeful prognosis at term, then adding preemie complications makes it worse. If they left him in, the fluid and swelling had a good chance of getting worse and his heart would completely stop.

It was ultimately my decision. The doctor's knew if he was born alive he would have to be born via c-section (he wouldn't be able to withstand a vaginal delivery), and they didn't want to have to do an emergency one on me as I've had issues with anesthesia in the past (when I was a kid). If they stopped to give me an spinal he would be at risk for waiting. Towards the end they also thought it wouldn't be wise for me to have a section anyway, since I am at higher risk for infection (from being overweight), and also he (my doctor) was trying to be realistic and didn't want to blow the rest of my reproductive future (where they would have to cut, etc) on this baby whose chance at surviving was basically zero anyway. They would consider it if he was able to make it to 32 weeks, but I think they knew it wasn't going to happen. My doctor also told me if having him inside me not alive was something I couldn't do emotionally, then he'd understand that, too, and would deliver him while he was still alive if that's what I really wanted. So I made the tough decision to leave him inside me, where he actually had the best chances, if he could just hang on a while longer. I just prayed he'd overcome it and get better on his own. It happens, very rarely, but it was possible. At that point it was all the hope we had. In the meantime I was also at risk for developing preeclampsia, which is a mirrored hydrops type thing in me (fairly common in mom's of hydrops babies), so they kept a close eye on my blood pressure as well as watched if any protein was spilling into my urine. We were also at risk for going into preterm labor with all this extra fluid.

Up until those last few days he was actually handling all the fluid pretty well. His heart rate was normal, it was checked mulitple times per day by the floor nurses with the doppler, and he was still relatively active with his movements. I was having u/s every day and he was getting an 8/8 on his biophysical profiles, which was good. Those last two days he wasn't doing as well, I had to roll over to get him to move, and the last day he wouldn't move at all. His heart rate was still good though. That next morning they couldn't find his hb so they called the doc who came up with the u/s machine and she found it, he was ok. Later that afternoon they couldn't find it again, and again the doctor came up with an u/s machine to my room. She couldn't find it either. The doctor went down with me to u/s (where I had been going every day). It was confirmed there the baby's heart was no longer beating. He was gone. That was Friday December 15th.

I asked the doctor who had gone down to u/s with me when I would be induced and she said it was entirely up to me. I could do it that night or wait til tomorrow, whatever I wanted. I honestly can't say enough nice things about how my doctor and his collegues handled what was basically a "no win" situation. Anyhow, it was already late in the afternoon and I decided to start the next day. I guess I also wanted one more night with Matthew. The next morning I got up and took a shower and waited for them to come and get me. I think I was also contracting on my own a little. I was told they would be giving me a spinal because they had to take out my cerclage and unbeknownst to me at my hospital they remove them in the OR, same place the put them in. I thought removal was an office visit procedure. I was just as glad, though, because I had been getting more and more uncomfortable during those two weeks. The extra fluid was taking it's toll on my body as well. It was all I could do to get up in the morning to shower, and I stayed in bed on my side all day (except to get up and pee every 10 minutes). The pressure had passed uncomfortable a long time ago.

So anyhow, they moved me down to L&D, and I had to wait a while before they did anything because they had a few emergencies. They finally took me in, and placed the spinal (they actually gave me a spinal/epidural combo for the rest of the labor). That went surprisingly fast and I was relieved when I started feeling my legs go numb. When I had it placed the first time for the cerclage placement, it took them a while to get it in, and the girl hit a nerve and I nearly jumped off the table. I think she might have been a student. I am all for the teaching hospital, but when Matthew was being delivered, I was already in physical pain (not to even mention what I was going through emotionally) and wasn't in the mood for anyone learning on me today. The doctor (anesthesiologist) was excellent and fast and I was very happy with him. They put my legs up in the stirrups and took my stitch out. Somehow I had actually manged to doze off during the procedure and was surprised when my "actual" doctor woke me up telling me he was done. I immediately dilated to 4 cm (a time saver in labor), so they ruptured my sac and I was contracting every 2-3 minutes. They didn't have to give me anything to ripen my cervix, afterall. A few hrs later they did give me some pitocin to speed things along a bit. About 8 hrs after, I was getting some right sided pain and they gave me more epidural meds. It worked for a while. Two hrs later I was really in pain (same side) but the doctor was delayed because he was placing back to back epidurals. He finally got there, gave me more meds, but they didn't work this time. It wasn't contraction pain, I think Matthew was sitting on a nerve and I was feeling a lot of pressure. I was actually fully dilated almost 2 hrs before he came out, but they figured it would be better (given the circumstances) if I didn't have to go through the pushing part. That would've been good IF I hadn't been feeling any pain this time, but I don't think the nurse was getting that. The one I had up til 7pm was wonderful, but her shift was over and it wasn't likely I was delivering any time soon after that or I really think she would have stayed. The new one was ok, but she just didn't have that "touch" of the first one. I still wonder if that first nurse had a loss or knew someone close to her who had, she was that caring. Anyway, I agreed to wait a little to push, hoping anesthesia was coming my way so I'd at least be comfy. Unfortunately it didn't seem to work this time anyway. As the doctor and nurse had their backs towrds me putting gloves on and whatnot, I told her I thought I was feeling more pressure and felt like I was leaking. I thought my catheter had come loose. It was the baby's head, and the leaking was just amniotic fluid coming out. Then I felt like he was just coming out on his own, his whole body, and he did. I didn't have to push him out at all.

He was pretty big for his gestational age and weighed 6 lbs 1 oz. A lot of it was fluid and you could see he was swollen, but I am willing to bet 4 of those lbs were actually him. He had been measuring pretty big along, and I asked if it was fluid earlier and they said no, they would've seen it on u/s, so it was all him back then. The nurse said he was 19 inches long, but seeing as how he had another 10 weeks to go, technically, I don't see how that is possible. The extra fluid can't add that much length to the baby's body. Perhaps I can find that out later.

It was recommended I have an autopsy done on him and I agreed. I didn't do one with Anna and they didn't think it was necessary, nor did I. We knew why she died, she was premature. There was nothing else wrong with her. We needed to figure out why she was premature, but we pretty much knew it was something on my end because she was normal, just too immature to survive outside the womb. I need to know the cause and hopefully pathology can give us a clue to why he developed hydrops. They may not be able to give us any answers, but if they can, now is the only chance we have. I need to know the likelihood of recurrence, and if we can find out the cause, then we should be able to know that. I'm hoping and praying it's a fluke thing that will never happen again. Matthew also had a 2 vessel cord (which we've known about a long time ago), and I wonder if that had something to do with it. Perhaps he did have some sort of heart defect or something. I have a 4 week postpartum appt January 22nd and we're hoping at least something from the autopsy will be in by then.

I got home a week ago Monday (a week before Christmas). I wanted to let you guys know what happened, even though I haven't really posted here lately. I also didn't want to freak out any of the girls who are expecting right now, so that is in no way my intent. I know how scary pregnancy is after you've had losses, anyway, never mind when you hear about something like this. What happened to Matthew is a pretty rare thing to happen at all (like 1 in 4000 births).

This here is the rest of my post on SC...

The social worker I had with both Anna and Matthew was trying to encourage me to come to the hospital support group and after I told her about my online support (I also post a lot on bbc) she told me how much she didn't like computers...I couldn't believe it because having a place where people would listen is a lifesaver for someone who would never go to an actual live support group. I have absolutely nothing against them, it's just not for me. Online I have support 24/7!! KWIM??

Anyway, I'm doing as well as anyone who's been down this road could expect. Right now I'm in that "don't know what to do with myself" mode. I don't feel like doing anything even though there is so much I could/should be doing. I can't focus or concentrate on anything. I'm living on the pc like I did in those early days after I lost Anna. Posting and researching...I don't know if I wake up every morning with a headache because I am up so late with my eyes glued to the pc or because I think I've been grinding my teeth from stress.

It's going to be a long road...and this time it seems so much worse. It's obviously not because I love Matthew any more than Anna, but because first of all, it's happening for the second time, and secondly, we got so much further and thought we were just about out of the woods and got comfortable with the idea he was coming home with us. I also knew from before I missed af I was pregnant where with Anna I found out at 16 weeks, so I knew I was pregnant for only 8 weeks when she was born. This time I had also bought so much more. I'm just so sad that this could happen to us again, but only worse in a way, because it feels like such a tease, and at least with Anna being born alive we still had a little hope she would survive.

Sorry for the incredibly long post...but thanks for listening...

SheriKCMO · 01-18-2007, 10:46 AM

Thank you for sharing! I'm so terribly sorry you are having to endure this loss on top of your first. I hope that you and your husband find a way to cope together and hang in there. It is obvious to me that you fought long and hard for your Matthew, and I wish the results had been so much better! Many hugs coming your way.

HannahE · 01-18-2007, 10:51 AM

Patty - my heart is breaking for you. Please let us know how we can support you.
(((Hugs)))

Hannah

angelzmom · 01-18-2007, 11:19 AM

Patty

I am so sorry for your losses. I have found this board to be incredibly supportive, but I did not know about them until well after my losses. I attended a support group in Providence and met 2 of my best friends there. I know that these groups are not for everyone, but you can get something positive out of them. Just thought that I would mention it - that being said - I have received so much support from my online friends that I understand the benefit of the pc too. Do what is best for you.

I hope that you get some answers to your questions - I remember how hard the waiting was and how frustrating it was to hear that there was nothing that they could find that caused the losses (full term still born due to down syndrome and complications, vanishing twin syndrome and turners syndrome). I will be praying for you on the 22nd.

If you need an ear of someone who has been there feel free to pm me.

Kath

AlisonMK · 01-18-2007, 11:57 AM

Patty, I am SO sorry for both of your losses. I wanted to send you lots of ((HUGS)) Let us know if you need ANYTHING!

bigbaby24 · 01-18-2007, 10:14 PM

(((hugs))),sorry you had to lose another child, my prayers are with you

Reebekah · 01-19-2007, 12:45 AM

i am SO sorry. i remember talking with you a bit on bbc a long time ago after you lost your daughter and i lost my twin daughters. i dont know what to say, i am so sad and angry that you couldnt bring your son home this time. please know that you are in my thoughts and prayers.

kirvygerl · 01-19-2007, 09:30 PM

My heart is breaking for you and your DH. Please know that I am praying for you.

Anonykat · 01-19-2007, 10:18 PM

I am in tears for you. How absolutely devastating. I pray that somehow, someway, you find comfort.

LK

enits · 01-20-2007, 02:20 AM

((((hugs)))))) I feel your pain. I wish there was some way I could help you. I'd love to have "virtual" tea or coffee with you and just listen to you. We could both talk about how difficult it is to lose our children. I hope that we all find peace someday.

Cyster1976 · 01-20-2007, 05:46 PM

((hugs)) I am so sorry....you and your dh are in my thoughts and prayers

ChocFish · 01-21-2007, 11:40 PM

Oh my heart breaks for you. I'm so sorry for your losses, my thoughts and prayers are with you.

PJC · 01-22-2007, 05:59 PM

You're support means a lot. It's not that I feel a live support group is a bad idea...it's just not all that convenient for me, either. It's at the hospital in Boston where I delivered both babies, and since I was there every two weeks plus anytime I was freaking out about a spot of blood...the last place I want is to have to be there every week or whatever. I don't mind going in there, don't get me wrong. I've actually thought about looking for work in there...but it's different when you're getting paid to be there, lol. I think one more commitment is just too much stress for me right now. Seriously, though, one thing i really like about online support is that I don't feel like I have to hold back...I know it's expected you would cry but unless I just can't control it I try to hold myself together...online I can cry as I type and someone is there around the clock, not just once a week. I don't hold back... AS I sit here typing my heart out to millions of people who could possibly be reading this, I could also not sit and tell one person (a therapist) all my troubles. That's just me. Unfortunately if the internet didn't exist I probably would have no one to talk to (that have been through it and understand). I have friends, but it's not the same as someone who has sat where I sit now (as you all know!).

Becky-I do remember you from bbc and here...

Anyhow, I had my doc appt today...

Results are still somewhat inconclusive. Everything looked fairly normal. Chromosomes were normal, baby had no evidence of viral infection. He was anemic, compared to what a baby at that GA should have for hematocrit levels. The doctor did not think his 2 vessel cord had anything to do with his hydrops, he told me it was not even worth considering. The only thing of significance they found was some clotting on his placenta. I asked about being tested for clotting disorders. He said he wanted to do it but it's better to wait til I am further past being pregnant (how the blood tests read w/hormone levels, etc). While i want to obviously know NOW, it's not like I'm planning a pregnancy right away anyway. He doesn't want me to wait long to try again, due to my age (OMG somebody's callling me old--I'm 34!). He is advising I try to lose some weight, but he did say it was really only for evaluation purposes (and obviously risks associated with a future c-section and any possible diabetes risks) and it had nothing to do with what just happened. I swear he is the first doctor I ever had who didn't make the hugest issue out of it. He said 100 lbs would be great, but he also said it might take too long and that the risks of being older are more than the 'risks' of chunkiness (ok, my wording there). He did say, however, that half his patients are over 35 and he even has a 50 yr old patient! He told me to see what i can do for the next few months and to come in for the blood work (for the clotting disorders) in the summer if I want to try again and we can see where can go from there.

I also asked about whether he thought I needed the cerclage again. He said we'll see how I feel about it when it happens but probably yes. He thought my cervix held up very well and the cerclage served me well. I asked about dilating so fast to 4cm when they took me in (to L&D). He said it's hard to really tell from that because my body probably sensed things weren't right and was trying to get rid of the pregnancy anyway.

In conclusion...(I feel like a lab report). No, what he did also say was the clot in the placenta could have been caused by a slight tearing from the uterine wall. He said if it was (what i assume he meant) an abruption, I would have had serious bleeding beforehand and it wouldn't have gone unnoticed. I remember him saying something about a placental infarction... He said his best educated guess would be this. The reason he feels this way is that it was sudden. The baby was doing great the whole time until he became hydropic. If it was something else, there would likely be growth restriction or something to that effect. He commented on what a big boy he was, even without the swelling. He was obviously not growth restricted (he was huge)
.
The results aren't completely back from Children's hospital on his heart. He said that part could take 6 months (just because they're slow) but he's not worried anything will come back. What they had examined in his heart was completely normal. Again, if it was his heart he wouldn't likely have been doing so well growth wise. He said he'd be concerned if he had a small placenta and too little amniotic fluid, so this sudden hydropic issue narrows down what the cause is. AS far as metabolic issues, same thing basically, except they haven't tested for those yet. I guess he thinks they may still have some amniotic fluid frozen. I'm pretty sure what he said is they would test that first (if I even got that right). I can't remember now. Anyway, he wasn't overly concerned with that either. I was freaking out yesterday wondering if it was something like that or even blood issues but he even said if I did have a clotting disorder, it had to be mild, I've never had issues with Anna's pregnancy or any issues with it period (and again the growth restriction thing would likely have happened).

Even though it wasn't conclusive, I am ok with it. I asked him if he was sure he didn't think Anna's pt birth had anything to do with what just happened. He said, "no, you just got struck by lightening twice." Then he said i should play the lottery...lol.
I've been saying that all along...lol.

I also (just as a curiosity) asked if it was better for a preemie to be born by c-section rather than vaginally. I had wondered because Anna had all the brain bleeding. I know she came fast so we didn't have a choice, but I had been wondering. He told me it was a really good question, and he had in fact just written a chapter in a book on it. Doctors have been puzzled by it themselves. He said even with a section there is still pushing only it's the doctors doing it so it doesn't really matter. He said the best way...not usually possible, is to be born vaginally, but with the membranes all in tact (so the fluid protects the baby). It doesn't usually happen that way, but that would be ideal.

I actually did well emotionally, only one small meltdown. The medical asst brought me in to the room and said she was sorry about what happened with the baby. I was touched she knew...it made me feel my doctor was expecting me today and prepared e/o else by telling them what had happened. Last time I had to explain losing Anna after I was asked if the baby was moving much (she thought I was still pregnant). WE both felt bad after I had to explain. Anyway, when she (the asst today) left the room she told me she hopes she sees me here again. That made me cry, so when the doctor came in I started crying...he thought it was the room itself but I couldn't explain without starting up all over again so I left it at that. He brought me into his office to talk, since I wasn't getting an exam or anything (yay!!). It's just so different this time because I have my own doctor, and last time I was at the ob clinic where I saw a different doc each visit. I honestly can't say enough good things about my doctor and his team. As busy as he is (and he is overbooked) it was like he really cared and was trying to save his own baby. It just makes such a difference.

ChocFish · 01-22-2007, 06:44 PM

Its great that you have such a strong and supportive team of medical personnel to help you through this. It sounds to me like you were incredibly brave and strong. BIG (((hugs)))

khenders · 01-25-2007, 10:01 PM

Quote:

Originally Posted by ChocFish

Its great that you have such a strong and supportive team of medical personnel to help you through this. It sounds to me like you were incredibly brave and strong. BIG (((hugs)))

My heart is with you. I have just had my fourth m/c yesterday. I am just trying to stay positive and attempt again.