Monday, February 2, 2009

Article on Recurrent Pregnancy Loss & California Octuplets

I've actually been sitting on this post a little while, having been distracted by other things. I came across this article last week on recurrent loss. Many articles I come across are usually pretty basic, mostly facts, a little human aspect which leaves you thinking "oh that's sad" and there is usually a nice pretty little tidy wrap-up; the lady in the story with the recurrent loss has a baby and they ride off into the sunset together - all better. This article was a bit different in the regard that there wasn't a happy ending - at least not yet. The author spoke about the conclusion to her story being either the physical and literal end of her childbearing years with another child or just having tried for that other child. Perhaps some of why the article got to me so much was because I could identify so strongly with much of what the author describes. I thought it was a very open and honest viewpoint that oftentimes gets neglected or glossed over. Many times the women who are deeply upset by loss are portrayed as desperate or obsessive and creatures to be pitied. The thing is - not all of us are like that, and just because we mourn our losses doesn't mean we aren't just normal human beings dealing with a difficult situation. I'm sure there have been people who pitied me over the years. I've been told a great many times how strong I must be, and just as many as there were who thought me strong, I am equally sure there have been a few who have thought me more crazy and obsessed. Personally, I think it was probably a little of each, with a healthy dose of mule-headed stubborn thrown in. I am sure that all of us have been told we are strong - strong at a time when we probably feel our most frail. Mostly though, I really just survived. Isn't that what you do? Survive?

In all I thought the article was a worthy read and got the point across without beating you over the head with it or going for the high drama factor. Hopefully the link will still work for you! If not, let me know.

The other topic that had me so distracted from getting this post up was the recent delivery of octuplets in California. I am not one to judge on family size and certainly not on the use of infertility treatments. I also don't tend to believe everything I read - but some of the stuff coming out since the delivery is a bit, well, mind-boggling and a bit unbelievable to say the least. Lately, a lady claiming to be the mother of the mother of the octuplets has been speaking to the press calling her daughter "obsessed" and also claiming that the woman not only lives at home with her parents, already has 6 children under the age of 7, is a student, not married and went through in-vitro. The thing I find most unsettling is if she truly went through IVF and ended up with 8 babies, that would mean they put EIGHT embryos back in this girl. This really disturbs me. Those of us who have been through infertility treatments know that the "litters" usually result from IUI and not IVF, since most doctors will only put back 2-3 embryos. With IUI, when overstimming, the doctor usually recommends scrapping the insemination and refraining from intercourse if there is a chance of a high order multiple pg occurring. Having been through the injections and trying to conceive beyond conventional means, I know how hard it would be to refrain if I have eggs and I am going to be ovulating - the whole point is trying to get pg right? What I am trying to figure out, is if this truly is a case of extreme IVF, who in their right mind would request eight (or more - since not all of them will take) embryos to be transferred at once and what kind of doctor would actually agree to that? Perhaps that is the issue - the right mind part. Which I rankle at because I have to wonder how many people will make the assumption that anyone who pursues assisted reproductive technologies must not be in their right mind and obsessed. Speaking to a friend of mine, she mused that maybe the doctor didn't think they would all take. Well, the chances of winning the lottery aren't that great either, but people do win the lottery, so it isn't impossible. Part of me doesn't think there should be "requirements" to be met for treatment. On the other hand, in situations that are somewhat extreme as this one in California may be - I have to wonder if there should be some sort of screening process in place, or even some restrictions. (Which I completely grate at that word - restrictions. As if infertility weren't limiting enough.) All anyone needs to do is google "octuplets" and you get a whole slew of articles detailing what may be the situation these 8 babies have been born into.

Another pet peeve of mine with this - is how all the press conferences at the hospital, they tell you that 8 babies ranging in weight from just over a pound to just over 3 lbs, born 9 weeks early and expected to stay in the NICU for at least a month are "all healthy, doing great and breathing unassisted." Okay - they may not be on vents - but most likely are receiving oxygen. My guess is mom received steroid shots to try and help mature their lungs faster prior to delivery. This was hailed as a "medical triumph" with 46 people in the delivery room and even a surprise "stow-a-way" extra baby. However, a baby who is expected to be in the NICU for at least a month and weighs less than a small bag of sugar cannot regulate their own body temp, let alone has enough energy stores to nurse adequately and is being fed intravenously or through gavage tube, is receiving oxygen that can lead to retinopathy of prematurity (ROP) but is a necessary "evil", and at risk for a whole plethora of not so great setbacks and/or permanent disabilities. That is not "doing great". Before I had my preemies (born at 33 and 36 weeks respectively - and not micro by any means, but still required NICU time), I had the mistaken idea that early babies were fine - just smaller than full term babies. News reports exactly like this one were what gave me that idea. The night my daughter was born at 33 weeks, I had no clue - not one iota of what giving birth to a premature infant really was going to be like. I really wish my doctor had prepared me better for the NICU. At 4 lbs, 17 inches, my daughter was bigger by a pound than the largest of these octuplets, I had been given steroid shots and gestated 2 weeks longer. She was on cpap at first because even though she could breathe on her own - she tired out rapidly and the alveoli in her little lungs were "sticky" due to immaturity - because these babies do not produce a much needed lung surfactant at first. That was the first day. She had an arterial line in her head. That was very upsetting to me as it is not easy to see this big tube stuck in a tiny, tiny head - and they don't put it in a vein, it goes in an artery. Her leg was splinted for her IV line and then her arm when they had to move the IV that supplied her with nutrition. The second day she developed a pneumothorax and they took a needle bigger than any I have ever seen before in my life and stuck it in her chest to draw off the air that had torn through her fragile lung tissue, so her lung could re-expand and she could breathe again. I didn't get to hold her until day 5 - because until then she was considered "Critical Care - Unstable" She was "Critical Care - Stable" when they finally let me hold her for the first time, arterial line still in place, leads attached to her chest, splinted arm, oxygen tube and all. The first week was literally hell. After that, things got better - slowly. There is a lot more she went through and yet, we were so fortunate. She has no lasting effects from her less than auspicious too early beginning and she came home at just over 3 weeks, weighing barely five pounds - dressed. We got off easy - no retinopathy, no hearing loss, no intercranial bleeds, no sepsis - just lots and lots of scars. Even after this - I still had the mistaken impression that my next preemie born at 36 weeks and weighing a whopping 7.5 lbs (for a month early, that's big) would be much better off. Not so. He had difficulty breathing at first too. Lungs. They get you every time. He only needed the cpap the first day and then was on oxygen for another week. He came home on the 8th day - but I didn't get to hold him for the first time and try breastfeeding him until the night before they discharged him. The doctor also wasn't convinced until 2 hours before they discharged him that he was going to be going home that day at all and that he wouldn't benefit from another week in the NICU.

Jessica NICU December 1996

The first time I had a NICU baby, I had one child at home - almost 3 years old. The second time, two children - one 6 and the other 3.5 years. I was torn. Wanting to be at the hospital every waking second - needing to be there, and wanting to be there for my other children at home, needing to be there too. I felt like a huge failure on all counts - my body failed my babies, I was a failure as a mom, I was a failure as a wife because the house was a wreck and I was a wreck too - notwithstanding I wasn't in great physical shape either - 3 weeks bedrest, hemorrhaging, csection - doesn't put you at fighting status. Being a NICU parent is emotionally and physically exhausting - even when things are going "well". I cannot even imagine multiplying that by 8 and throwing in six more children ranging from 2 to 7 years on top of that - by myself. Even once home, preemie infants are high maintenance - not a week went by without a visit to the pediatrician. Not having a phone call in to their office every other day was unusual. I had to keep a journal and calendar of all the medications and issues just ONE baby was having. Things were difficult enough even with another parent thrown in the mix. I wish that when they hold these press conferences they would honestly state that prematurity is a struggle. These are not just "mini" babies - say that they are doing about as well as can be expected for their size and gestation, and hopeful that every day will be a little bit better than the one before, but they require critical care and time.

Today I sit here and wonder though, me who has never criticized someone else for family size or the lengths they went to getting there, how much of a good idea it is not to ask some questions at least and if maybe a line should be drawn somewhere? Because at some point it stops being about me - what I want and need, and starts being about the child (or children) we bring into this world and what they need. Most of the time - these two purposes balance themselves out - in this instance, it seems a bit lopsided, okay - really lopsided. Wouldn't it also be beneficial to stop presenting this Oprah-esque, rose-colored glasses, riding off into the sunset view? The one thing I do know for certain, these eight newborns and their siblings are going to need a lot of care, love and attention. I hope they receive it. I hope they are all able to make it home and that home is ready for them.

9 comments:

loribeth said...

What a great post, Julia. I've refrained from blogging about this so far because so many other people are saying it so much better than I can, & you're definitely one of them. Thank you for sharing your experiences and perspective -- I think you may have opened some eyes today! (One can hope, anyway...!)

Mrs. Spit said...

You know, I had the same conversation with my mom last night.

And I'm astounded. They, legally, are not allowed to implant more than 3 embryo's in Canada. There's another mum whose blog I read, and she had 5 put in. I just don't get this. I really don't.

CLC said...

Julia- You have provided great insight into how difficult it is to have a preemie. I laugh at the news every time they say these kids are doing great. There's no way they are "great" and I wish the media would portray it accurately. To me, it sounds like the Mom has some mental issues to deal with, so my anger is mostly towards the doctor. And why haven't they revealed who the doctor was that thought it was a good idea to implant 8? Seriously, he/she's irresponsibility does the whole profession a disservice. And didn't anyone think to ask this woman how exactly she was going to raise 14 kids on her own, with no job? None of it makes any sense.

Cara said...

What a heartfelt post. It just rings true with your experience and completely blows the whistle on the media.

Thank you for a real glimpse at what NICU life is like.

xoxo

Kristin said...

Well said Julia. I have had many discussions about this but I've avoided blogging about it because I was worried it would turn into a rant.

Rachel said...

I have wanted to write a post for awhile, and hadn't until today since none of my normal reads had written about it either.

I was pointed to Mel's blogger post and then came across your blog. This is so well put, it makes me want to just delete my post. Thank you for sharing about having premature babies. It really opened my eyes.

MrsSpock said...

The thought of transferring 8 is mind-boggling. The NICU is no fun for a baby.

By the way- pop over to my blog- you won something! Drop me an email- mrsspock9@gmail.com.

Cibele said...

Wow, I am sorry you had to go through all of this. Thanks for sharing, you put it so well. These baby will need lots of love and care

Busy Momma said...

i can't believe they're saying these babies are "fine"!! I don't have tv right now so I haven't seen anything on them and I've been too tired do much on the computer so i'm glad i read your post. I completely agree with everything you said. 8 is insane. I'm all for helping a woman get pregnant, but 8, that's pushing it.