Sunday, September 19, 2010

It's official. Thank G-d for Dr Collins.

Well, it's official. Officially sad and tragic actually. Cord issues DO recur in subsequent pregnancies. I'm living proof (amongst the other 1200 women who've been studied!). For those of you who aren't aware, my beautiful and flawless daughter, Shiloh, was born sleeping at 39 weeks, 5 days gestation due to an umbilical cord accident in Oct 2008. The cord was wrapped so tightly once around her neck (nuchal cord) and once around her body (body loop) that my OB couldn't even slide her fingers underneath it to free Shiloh after she was born. Her arms and neck were indented from the pressure of the very organ that was meant to sustain her life in utero. How ironic. *As I write this, tears are streaming down my face. Did this really happen to my daughter?* I miss her terribly.

Now, I'm pregnant with number 2. A little sister for Shiloh. I only wish she were here to experience it. I've been conflicted the entire 28 weeks. I'm scared out of my mind (which I previously thought was unsubstantiated, but due to prior experience). I wake up 5 times a night to make sure she hasn't passed away during my sleep. I freak out and think the worst if she is moving too much or too 'hard'. I contemplate running to the hospital every time she has the hiccups (yes- hiccups are ONLY related to cord compression. If your baby has hiccups, the cord IS being compressed one way or another, at least at certain times). Sometimes, when I'm really deluded, I even think this baby is Shiloh, that I've been given another chance with her (I haven't told ANYONE this before, and I feel awful just saying it). Yes. I'm a full-blown nut job and it's starting to wear thin on my being.

But the point of this post is actually to write about my appointment with Dr Collins. I just returned from my trip to Louisiana (a few hours ago!) to meet with Dr Collins regarding the home monitoring for this baby. He is such a passionate, caring man and one that truly wants to rid the world of unnecessary infant death. So, he gave me an ultrasound and hooked me up to the monitor for 30 minutes to check the baby's heart rate and to see if I am having contractions. I'll just get to the point- he confirmed my worst fears. There is cord compression (the baby has been having hiccups 2-3 times per day for 5-10 minutes each for the last 2 weeks) and she’s even having minor decelerations. The cord is possibly being compressed in one or all of three different places. Right now, it is between her legs, around her back and draped over her neck. It's not 360 degrees around any body part, but it's enough to cause her to lay on it or squeeze it at certain times. Now, the decelerations are only 10-30% and she only had 10 in 30 minutes, so he says the baby is ok for the moment, but if it gets worse- 50% and 30 in 30 minutes- I need to deliver. He wants me to get weekly, high-resolution ultrasounds to see what the cord is doing. So my fears are substantiated and now I'm beyond terrified. I want to get this baby out now. A.L.I.V.E. 

My OB is totally on board with whatever I want to do, but my perinatologist (who has the high resolution U/S) is not. I had to jump through hoops at 25 weeks to get him to do another U/S to check where the cord was. I begged him to start the non-stress testing at 32 weeks, instead of 34 (which was a compromise- I wanted to start at 30). He believes that the published work on stillbirth is not peer reviewed and has a biased population. He doesn't believe that cord accidents recur and doesn't make an effort to read the available literature (of which there is plenty, which has been peer reviewed by over 30 medical academics, thank you Dr Collins). I'm über-worried because I know he's going to resist when I tell him I need weekly ultrasounds. I feel a tiny bit confident that I will have the home monitor to fall back on for more accurate self-interpretation, but I'm still scared out of my mind. I need the support of these OBs and the hospital, not for them to put up a force field, and I hate that I have to singularly be so damn proactive. Doesn’t everyone want a baby to be born alive if its demise can easily be prevented? I’ll never understand how ignorance can be blissful for the medical community.

To be continued….


Annie said...

Oh, Rachel, I wish could take over the worrying for you for a bit so you could have a break. I'm good at worrying! I'm SO glad you were able to see Dr. Collins and get the monitor. I hope it will give you some peace of mind. I'm VERY UPSET with your OB though! Could you get in with a perinatologist based on your history and Dr. Collins findings? The one I saw recently said that if I get pregnant, I could come in every day if I want to get checked on. She also recognizes that cord accidents DO recur. I know there are limitations with insurance, location, etc when looking for a doctor, but is it possible to do a little doctor shopping? I hate that we have to fight so hard to be taken seriously!! I'm praying for you and your baby.

PS If there's any good cord info you've come across that's not already on my blog, please let me know so I can add it.

Kiki said...

I agree with Annie about Dr. shopping. Dr. S-head is the only perinatologist in town, but what about Ventura or LA? I've heard of several women going elsewhere for v-bacs. I bet your OB would interface with another peri?


rebecca said...

Oh this is so unfair, I'm so sorry you're dealing with more fears and worries. How terrifying, glad you have Dr. Collins, but I agree why in the hell are these other doctors not on board?! It is ridiculous you're being forced to fight for what you need to keep this baby healthy!
Hoping things settle down a bit for you & above all that this baby stays healthy.

Michele said...

Oh My Goodness! Here from LFCA, and am sending prayers. I hope that you are able to convince your peri that early delivery may be the best option. If your OB is on board, honestly, to me, that would make my decision a lot easier, since he/she is with you in the ins and outs.

justine said...

Here from LFCA. If your perinatologist is not being supportive, I think you should find one that is ... and who will work with Dr. Collins. How scary for you ... I will be sending you good thoughts that things work out and that you'll have less cause to worry soon!

The New Simons said...

Hi ladies. Thank you for your kind words and your thoughts. I need all the positive thoughts and prayers I can get! Unfortunately, the perinatologist I am seeing is the only one in my immediate area (the closest would be about an hour away). I don't really have the mental strength to travel anywhere else to see another peri. I also feel like he should have some sort of connection to me (because I went to him when pregnant with Shiloh), instead of treating me like a number. I think I need to have a long talk with him during my appointment this Friday. Fingers crossed that I get through to him.