Seeing it coming... what can I do to prepare? (X-posted, different questions)

[CorasMama]

(x-posted on NICU parenting, different questions)

Had my 12 week ultrasound today. Baby has a Giant Omphalocele. This is what we call Not Good News. Best case scenario is multiple surgeries and probably ongoing problems. We'll be getting an amnio next month to determine what, if any, other genetic disorders are present (omphalocele usually occurs in conjunction with other problems.)

We're already being given an appointment at Children's for about 24 weeks.

We've switched to high-risk OB care, obviously. When I get over the shock, I'm sure I'll process the loss of my crunchy pregnancy and birth care I've dreamed of.

But how I cope is information. I want to know it all, be prepared for every contingency (yes, I know this is something I'll have to just get over, but I'm not there yet), and have as much knowledge as I can cram into my brain.

So what I'd like is this:

What do I need to know about coping with the first few weeks?

How do you deal with a pregnancy that you know will have, at best, a difficult outcome, and at worst, a tragic one?

What do you wish you knew first?

Does anyone else have experience with this?

I'm sure I'll be back with more questions as time goes on and as I get more information.

thanks in advance!



(oh, and ps., and I'm not going to say this very well, because I'm in shock, so please don't be offended. I am not currently looking for any alternative medicine treatments or such, or to have a conversation on how I manifested this problem or can manifest other problems or solutions through the LOA. No offense, it's just not what I need right now.)

[Lindsay1234]

Im sorry about all of this, I know how hard it is. We were in your shoes when I was preg with my now 7 month old dd. (Except hers was her heart) These answers are form my experience, I hope I dont say anything that generalizes all of the SN parents!

There is no way I can explain to you how it feels the first few weeks. You will be in shock, pack a notepad and write everything down, you wont know what anything means but you will want the info! Plan to pump milk asap. Ask your doc the scenario that will play out in the delivery room. My doc explained everything so when I had dd2, (besides the surprise dystocia), everything was how she said it would be. How many staff, they would take dd2 immediately, etc.

With Sophias heart defect, she was going to be born pink or blue, there was no way of telling before hand but we were prepared for the NICU to take her immediately. What we didnt plan for was shoulder dystocia and her being intubated incorrectly. Not that any of that is going to happen to you, but just an example of all our "careful" planning having a monkey wrench thrown into it at the last second! We planned for the worst, I gave up my homebirth too and that was something I really grieved. It was HARD to lose that after having a previous HB with my first dd.

Knowing dd2s heart defect was a blessing. We were able to look up pics of kids with it, see pics of kids right after surgeries. We knew she would be ventilated, so we (my dh, dd2 and I) looked up pics of ventilated kids. When my dd2 and I finally got to see her, we were pretty comfortable with the wires and tubes. We knew what most of the IVs and tubes were before the birth.

What I didnt know before this was how resilient babies are. Seriously. My dd2 had a traumatic birth, incorrectly intubated (lack of oxygen), cardiac arrest, seizures, kidney/renal failure, grade 5 kidney reflux, 2 open hear surgeries by 7 months (first one at 6 wks) and a g-tube surgically placed for oral aversions. We were told she wouldnt make it, then, shed need a kidney replacement, then shed never make milestones, possible cerebral palsy, neck surgery to fix the damaged nerve form the dystocia, oh and theres more!

BUT...

She is hitting milestones! Her kidneys are fine! (reflux is getting better, normal levels) Heart is working as it should, released from hospital after her 2nd open heart surgery after only 6 days. Rolling, cooing, laughing, grabbing, eating! Can you see that pic of her? She is truly a miracle baby! So even when things seem hopeless...


Whoa, I wrote a lot but I wanted to make sure you know youre not alone and there are lots of people who have had a prenatal diagnosis and we got through the pregnancy and the aftermath!

[sbgrace]

I babysat for a boy when I was a teen who was born with that condition. It was a surprise (no ultrasound) and traumatic for all involved. That said, he's a happy, healthy college graduate now. I know not every outcome is like that but I wanted to share my experience with that condition.
I didn't know about my son's issues at birth or prior. But I do identify with what it feels like to grieve with information you receive and the loss of the dreams that it dashes. My only advice on preparing (outside of getting all the information and planning you can) is to allow yourself to grieve. That just takes time. One of the hardest parts is the balance. It can be consuming at times and the rest of life gets pushed. If you've got support and care for your daughter for those hard days when you might just need to be sad that can help.

I, too, crave information and answers. In our journey I've often lacked them. But I got used to the unkowns or at least accepted them better than I did at first. I do think that trait of yours will help you meet your child's needs whatever they might be. You are his/her best advocate and researcher and I suspect that role will come naturally to you.

I'm sorry you're facing this.

[khaoskat]

Originally Posted by CorasMama

How do you deal with a pregnancy that you know will have, at best, a difficult outcome, and at worst, a tragic one?

I have not been there due to an abnormality or anything, but I have been there because of a full term loss.

After a full term loss (and for many after almost any loss) you totally loose faith and fear the worse constantly. You always fear that you will loose the little one you are carrying, so based upon my experience with having gone through one pregnancy after an early loss and then a pregnancy after a full term loss (and now on a second pregnancy after a full term loss), I will answer some on this one.

For me DD2's pregnancy was not easy. It was an emotional roller coaster. We lost DD1 at full term, we had an umbilical cord issue that leads in some cases to fetal demise and in some other cases major birth defects (about 20-30% of kids with SUA fall into one of these two classes). We knew we didn't have this issue with DD2, but it didn't ease my mind that we wouldn't loose her.

I took things one day at a time, one kick at a time, one appointment at a time. I purchased a fetal doppler to check on the HB all the time. It was never easy. I was a total **tch, especially the closer to the end we got, knowing that things could end tragically any second. Even during labor, the normally crunchy mommy that I am, gave in and feel in love with listening to the HB and used it as my focus.

My best advice, take things one day at a time, enjoy every day that you have. Take pictures of your belly, at every US ask for a picture. Keep a journal, and make a scrapbook of your pregnancy.


If you are fearful something will happen at birth or shortly there after, get phone numbers of organizations like "Now I lay me Down to Sleep", know the means of best contacting your spiritual support person (priest, rabbi, etc.), know the name of the funeral home you want contacted. Just put this information in writing, and leave it in the bottom of your hospital bag (even if/when you go in for fetal surgery). This way, if you need it, you have it and are not scrambling if things go wrong (like we had to do). There was so much information the nurses wanted to know when we lost DD1, that we had no clue.

Also, don't make rash decisions. I totally hated when they were asking if I had to have a c/s if I wanted my tubes tied, after I just been told my baby was gone. I would talk with your OB before hand, and tell him your desires of this from the get go, and remind him/her of it at every appointment, because you really do not think rationally when bad things happen.

Also, think about what you might want to do after birth with your breast milk, if you baby should not need or be able to use it. It wasn't anything I thought of in advance, but after we lost our DD1, I wanted to make sense/some good of what happened, and figured I would make another child's or person's life go a bit smoother and pumped milk and donated for about 3 months.

Again, I would sit down with your SO, and make some advance decisions for a worst case scenario and have all your wishes/desires written down. Put it away, in a safe place until you are ready to pack your bags. Then, put it away in your bag, when you pack them so that if you need the information you have it.

Then, just enjoy every day you have with you little one right now. Make memories of it while you can.

[Liba613]

A friend of mine had a child with the same condition. It was a very long hard road filled with all of the possible complications and an eight month NICU stay, but she is nine now and a great, healthy, wonderful kid.

[2boyzmama]

there was a baby on here not long ago i think with that...she had a lot of complications and her parents ended up flying her across the country to get omegavan (sp?? does anyone remember her?) because of some of the complications. try a forum search here and in nicu parenting.

[mamamillet]

My dd was born almost a year ago with gastroschisis. I had no US so we had no knowledge of the defect before her birth. We were very very lucky in that almost everything with her recovery went as smooth as possible. First, she was 8 lbs 11 oz and the initial surgery to put her intestines back inside her abdomen was completed with no need for a silo (where they slowly place them back in giving the abdomen room to stretch). Secondly her intestines were in good shape and in 2 weeks time she was allowed to take food by mouth. I was lucky to be able to pump a ton of milk and I started her with an NG tube rather than bottlefeed to improve our chances of a good BF realtionship. She was dischraged from the NICU at 28 days old and has done great!
My advice to you is to try and maintian as normal a pregnancy as possible. When you say "giant" how much of the internal organs are involved?

[CorasMama]

by giant, I mean giant. It's an actual classification of omphalocele. And hers is as large as they come, with everything from the stomach and liver, down to the bowels and bladder, out in the omphalocele.

We're still waiting on the CVS test results to tell us about a number of things, as well as the AFP. We had an ultrasound yesterday, and were able to see the bladder, which was a relief, because hadn't seen it at all last time. We'll have another one in 3 or 4 weeks, and hopefully find out more info. The baby was in a bad position to get a lot, but there is "a concern" about the spine. And the doc, normally pretty straight-forward yet optimistic, was vague and unencouraging.

[dpeacey]

Wow. I know that this is hard. My daughter was diagnosed with ACC (agensis of the corpus callosum) at the beginning of the second trimester. I was so stressed out during the pregnancy -- ACC is a symptom of Aicardi Syndrome, which is most often fatal. And then I would stress out about being stressed out -- since stress affects the baby.

Even though my daughter was very sick after the birth, I felt better. The unknown and the imagined is so much worse than reality. I held her in my arms and knew whatever happened, it would be OK and I could handle it, and that I loved her.

My advice to you -- look at the news as a blessing. You know now -- you can try to prepare for it. At our hospital there are social workers and genetic counselors associated with the clinics who are there to help and guide patients. Line up help and support from family and friends now -- trust me, you will need it. Let people set up a schedule to bring you food at the hospital, look after your house, etc. Sometimes the hospitals have support groups for parents of children with issues -- it helps to talk to someone who has been there.

I wish you and your baby well.

[heatherdeg]

Originally Posted by CorasMama

How do you deal with a pregnancy that you know will have, at best, a difficult outcome, and at worst, a tragic one?

I can identify with this question albeit for very different reasons. We were with a peri from the get-go and spent an entire pregnancy with an u/s every two weeks (for a grand total topping 17) to be sure he was alive, and if alive--growing. We spent the entire thing not knowing if he WOULD arrive.

Yeah... crunchy pregnancy right out the window. I mean, thankfully my peri was very anti-drug unless ABSOLUTELY critical (I wound up with wicked pre-eclampsia so I wound up on meds).

And we had another (complete surprise found out at 13wks) pregnancy subsequent to our son's birth with a REALLY bad CVS result and u/s showing all kinds of problems.

Things you should know:

* You CAN challenge the number of u/s' that they push on you. In retrospect, my peri COULD have known if ds was growing by measuring me and listening for his heartbeat without an u/s. I really wish I would've thought of all of that, but in my anxiety and worry, I didn't.

* If they give you the "FISH" (prelim) results of the CVS, please take them with a grain of salt.

* Make sure you know the hospital policy on seeing your baby if/when s/he goes to the NICU. My peri allowed me to sit out the 24-hour wait post c/s to see my son. With the subsequent pregnancy, my ob said that there is absolutely a way around that so I could see my child without the wait (although I don't know how). If you find the hospital policy (or their take on what the norm is) to be unacceptable, talk to your peri about this. I would actually talk to your regular ob as well. Had I done that, I could've fought to see my son sooner.

* Although you don't want to know about alternative stuff, find out about it in case it gets pushed on you post-birth in the first day or two when you're not likely to be in a position to look into it then--ya know?

* If people ask what they can do for you, set up a support network for the NICU stay. Cleaning, cooking, whatever. Our saving grace during ds' NICU stay was that it was January and we came home to (very unexpectedly) dinner left in our side porch every night. Without that, we'd have been doing a lot of eating out (read: lots of money and horribly unhealthy).

* Look into a good breast pump and find out if your hospital has good lactation support. If not, line it up outside of the hospital beforehand. Mine got breastmilk through his feeding tube in the NICU for his entire stay.

* Tour the NICU of your hospital. Ask them if they encourage "kangaroo care" (skin on skin contact/holding with the parents) and how they support this (mine had screens to bring around his isolette). Also ask what would prevent you from holding your child. In our case, it was a chest tube; but once that was removed--he could be held even though he still had other stuff.

* When you get further in your pregnancy and are more sure that the baby will have a NICU stay, be sure that any clothing you buy is specific to NICU use: so it snaps around the baby instead of having to slide over the arms, legs or head. This is huge for wires and monitors.

* They DO sell cloth dipes for preemies (I'm not sure if your child's condition is prone to premature birth).


That's all I can think of. Hugs to you.

[cascadesmama]

I don't know if this is overstepping the boundaries or something you don't want so please feel free to ignore this or the mods can delete this post if it is inappropriate. I started researching giant omphaloceles after reading your post and found this story. It is the webpage by a parent of his son's story of his giant omphalocele. The little boy has a wonderful outcome and there are great pictures showing his progress. It also has lots of wonderful links to support groups and other resources. I hope this helps.
http://nmsutter.homestead.com/zacksomphalocele.html