A new blog titled The Preemie Experiment has gotten some posters on the Preemie-L list riled up for acknowledging that 1) preemies tend to have long-term problems and 2) caring for them is hard. Oh boo - mean old bloggers making people sad by acknowledging the truth. Whatever is the world coming to?
OK, it's widely known that I'm a big old bitch, but I've always found the Preemie-L list way too "speshul" for me. Oh God, the angel babies... the emoticons... you need an insulin drip along with the DSL line.
Like the author of the aforementioned blog, I don't want to have more children. Part of me wishes that Susan could have a sibling, but I can't face another pregnancy. It is not highly likely that I would have complications again. There is, however, some increased risk of another case of pre-eclampsia, another genetic mutation, and another prematurity. When I think of how easily it all could have gone so much worse - either losing Susan or her having profound disabilities - I can't imagine facing that possibility again.
With Susan, I had no idea what I was getting into, so I had no opportunity to bail out. I was low risk, so I had no prenatal testing. If I had tested, we would probably have learned about some of the problems in time to terminate. What an awful thought, right? In all honesty, I know that it's what we most likely would have done, for the same reasons I'm avoiding future pregnancies altogether. I never want to have to make that choice.
When the shit hit the fan in my pregnancy, DH and I discussed contingency plans with my O.B. A dear friend of ours had recently lost a child, our godson, after three years of pure hell due to his massive disabilities. We didn't want to go through what they had - it cost them their jobs, home, and marriage - and most importantly we didn't want our baby to suffer. (Our godson was not a preemie. He just had a different form of plain old bad luck.)
It obviously made the O.B. uncomfortable, but we wanted it to be very clear that if she was not going to have any quality of life, we did not want heroic lifesaving measures taken. The docs quietly reassured us that if we did get to such a point, where she was suffering had had no chance of meaningful recovery, there would be no legal battle to stop aggressive treatment. These decisions are made in hospitals all the time. There's just no public notice, nobody sends out a press release. It's just a quiet understanding between doctor and patient. Our doctors emphasized that we were a long way from making that choice, and fortunately we never got there.
Susan was one of the 2% of babies born under 1 pound who did not have any brain bleeds. She didn't have any significant heart, lung, or gut problems. No ROP. She was just small, and she still is. When she was getting close to discharge from the NICU, I spent some time reading over her chart - which had grown to two thick binders full of records. On the doctor's intake notes from the night she was born, there was a brief notation that once she was stabilized, they would wait 48 hours and observe before deciding on an ongoing course of treatment. The neo never said so to me, but I know that he had the same worries as I did, and if push had come to shove he'd have been with us, whatever course we decided to take.
4 comments:
I admire you for having the courage to tell the truth about your life with your daughter. And to do it with such a wicked sense of humor!
BTW, I once gave a copy of "Welcome to Holland" to a group of Dutch neonatologists who shared it with their national Board of Tourism.
Helen Harrison
Mom to Ed, 31 years old, born at 29 weeks resulting in hydrocephalus, MR, autism, severe vision impairment, CP and so much more
Helen1144@aol.com
I appreciate your point of view, but feel it could be made without being so condescending to other preemie parents. The parents I see on preemie-l everyday are just trying to do the best for their child.
Interesting. I've certainly never intended to be condescending; except maybe for that sentence that starts with "oh boo" where I was being sarcastic. There I was only referring to the people who criticized DDR for her expressing her own thoughts.
I don't fault Preemie-L at all. It not my style, but obviously it's helped a lot of people and that's a wonderful thing. I believe most preemie parents are tough enough not to be too bothered by a curmudgeon like me.
Hey Nola....have a special needs child too....I love the name of your blog!! You've probably heard this essay, but personally I feel this one is unfortunatly a bit more meaningful to us parents.....
Where are the Parents?
by Sue Stuyvesant
Hey everyone. For those of you who don't know me (I'm only an occasional poster) I am mom to Michelle, 9 years old, microcephalic, athetoid/spastic CP, cortical visual impairment, seizure disorder -- and CUTE! OK, now for the reason I'm posting.
To make a long story short, earlier this week a question was asked by some nitwit official as to why there weren't more parents (of special needs kids) involved in the local PTA and other issues that have come up that directly involve our kids. His question, which was passed on to me was, "Where are the parents?" I went home that night, started thinking - and boy was I pi**ed - and banged this "little" essay out the next day on my lunch break. By the way, I took copies of this to the school board meeting that night, gave it to a couple of influential people and it WILL get around.............
Where are the parents?
They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child's medical needs can be properly addressed. They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.
Where are the parents?
They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet. They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube. They are administering medications, changing catheters and switching oxygen tanks.
Where are the parents?
They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering, "Is this the time when my child doesn't pull through?" They are sitting patiently in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ. They are waiting in long lines in county clinics because no insurance company will touch their child.
Where are the parents?
They are sleeping in shifts because their child won't sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm. They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of their own.
Where are the parents?
They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive. They are struggling to keep a marriage together, because adversity does not always bring you closer. They are working 2 and sometime 3 jobs in order to keep up with the extra expenses. And sometimes they are a single parent struggling to do it all by themselves.
Where are the parents?
They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn't cost them anything. They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families.
They are busy, trying to survive.
Sue Stuyvesant 10/15/96: Permission to duplicate or distribute this document is granted with the provision that the document remains intact.Sue passed away in October 2003. Michelle passed away a week before she as to turne 18 in September 2005.
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