First, why the genetic testing? Well, we actually always had it done with our other kids. Not because we would want to make "big and touch decisions" after the 12 week mark - like later term abortions, which I do not support for any reason - but because we wanted to be prepared.
Recently, when we've shared with certain folks that we did genetic testing, we have had responses like, "Well, we opted not to have that because OF COURSE we would NEVER do anything to end our pregnancy." Maybe it is me being pregnant and sensitive or maybe it is me just reading into too much. But, when they say that, it makes me feel like they are implying that we would do something. Rather than use my defensive communication techniques, which I learned from true professionals, I have opted to just say, "We chose to pursue it and always want to walk into a situation as fully informed as possible." What none of those folks realize is that my mom was told I was going to be born with Downs Syndrome and she opted to continue her pregnancy and care for a baby that may have significant health problems. She did not care and continued a very difficult pregnancy full of complications still the same. Will I ever forget that? Obviously no.
We also have some friends that we have since lost touch with. They believed that genetic testing for their baby was unnecessary. They did not even consider the possibility that their first born child would be born with a severe chromosomal abnormality that usually does not even permit the child to live past birth. When the child was born they, nor the health care providers, were not prepared either physically or mentally for the challenges that lay ahead. Maybe if that baby had been born at a hospital with the right kind of facilities the outcome may have been a bit different. Maybe if the health care providers delivering the baby knew ahead of time what was to come the NICU team would have been on standby. Maybe something could have been done to prepare the new parents for what to expect the first week, month, or what options they had as far as surgeries before or after birth to treat that child.
No - they were not prepared. Their child eventually passed away from complications as a result of the genetic disorder, and their marriage died, too. We are no longer in contact with either of them because it just became such a messy ordeal between them that we had to step away from the situation and let them move on with their lives. I just wonder, though, if the outcome may have been different had they known ahead of time and could have spent 6 months preparing and laying a foundation of rock for their marriage so that when the floods of a severely ill child came along they would have been prepared and could have cleaved to each other and been prepared months in advance as which kind of health care they would want to provide for that child.
Their story stuck with me for years before we even had children of our own. It made it so that we determined that we always wanted to know what we were going into with each of our children. Now, having other children to consider, we felt it even that much more important to ensure they would be informed in case there was something we would need to prepare them for.
This third time around we actually had the option of a new blood test that takes maternal blood and extracts the baby's blood from it to be grown in a lab. The blood contains the baby's DNA and as such we can determine various genetic disorders as well as baby's gender.
Last Thursday the kids and I were napping and the nurse at my OB office left me two messages saying it was important that I call for the results of our lab work. I tried calling back but it was after hours. I actually took several deep breaths and continued to ready myself for potentially life changing news all while I was packing my bag for tap dancing class. Then I saw that she had left another message at 5:30 on my cell phone. Then I really started to panic. As I was doing so and about to walk out the door to load the car, the land line rang. It was the OB office. I immediately picked up.
The nurse said my results were in and asked if I had a few minutes to go over them. My heart was pounding so loudly in my head. I dropped my bag at my feet and sat down on the bed. She began by saying the results are 99.6% accurate so not 100% but...everything was normal and she could tell us the gender if we wanted. After what I am sure was a long pause on the phone, she repeated, "Do you want to know the baby's gender?" I collected my thoughts still saying a silent prayer of thanks that all was normal and stated that indeed we wanted to know baby's gender. Her reply, "You're having a baby girl." I thanked her and said I would see her at my next appointment. Above and beyond the call of duty to keep calling with results so persistently but also a little disconcerting.
Rule number one I learned as a nurse when calling patients - If there is nothing worrisome to report in lab results say so up front even in the message on the phone. "Hi, this is Nurse J. I have your results in. Nothing worrisome but I did want to review these with you." Hubby actually suggested this to me after a similar experience with the dermatology clinic. Now I do the same with my patients. Especially now, being a NP, it is a bit concerning when the person ordering the lab work calls directly. I still try to call all my own lab results so I ensure no one is left hanging and worried like I was. Especially when calling after normal business hours.
So, there you have it - the two things I wanted to discuss and document in this posting. At the end of the year our blog becomes a book and will be passed on to our children and grandchildren some day. I want them to be able to read about these experiences which may account for the detail.
Yes, we are extremely blessed and grateful that there is a 99% chance of everything being great. We do have a significant risk for having a clubbed footed baby because the only "defect" I was born with was having a clubbed foot but I wore a brace for two years and no one can tell otherwise. My "defect" did not stop me from training with a professional ballet company or continuing my dance studies to this day.
By the way, I missed my tap dance class after that phone call because I was so exciting when hubby got home to tell him the news that I drove off without my tap shoes. Tap dancing is kind of mute - literally - without proper footing attire. Oh well - we have an anticipated healthy baby girl coming in 5 1/2 months and everyone is SO excited.
T says, "Mom, I guess it's going to be just Dad and me as the men of the house." Lil Sis says, "Now I'll have my own Bebe Sister - YEAH!!!" Me, I say, "Whew, we already have all the girl clothes we need!" T Rex Dad says, "That's what I was aiming for and she's going to be beautiful but probably taller than you, Dear." Yes, I've come to the realization that everyone in this family will be taller than me someday but I will embrace my shortness and enjoy the beautiful family I have been blessed with.
One other side note, this baby girl is also very lucky. I have won two raffles since I've been pregnant. Everyone keeps telling me to go buy lottery tickets, but I actually think my winning lottery ticket is growing in my belly right now in the form of a baby girl.
Enjoy the photos. When I first saw the face profile I immediately saw the same image from Lil Sister's 12 week ultrasound. A couple of other tidbits. She is our only baby from my left ovary - the other two came from the right. Placenta position is left posterior - left back. Weird facts, I know, but I love asking odd questions of my health care providers.
6 comments:
I enjoyed reading this post. Too often people assume that those who do genetic testing, will have an abortion if something is going to potentially be wrong with the baby.
I also agree with you about phoning patient's family members. Every time I have phoned from the hospital, I say, "This is Sarah calling from ____. It's not an emergency." Then I go on with the reason I called. It puts family members at greater ease.
I enjoyed reading. Yay for baby sister :)
Oh, congratulations! I didn't do genetic testing with any of my kids, but it was for fear of external pressure if anything is found to be wrong. I can totally understand your desire to be prepared. So happy for you!
Hello there!! What a clear and good ultrasound! In mine, you could see my son sucking his thumb. I loved that!! Kept looking at it always.
As far as genetic testing, we did it because we were advised to because of "advanced maternal age" (I was 36.)It is better to be prepared … and people should just shut up and not make judgments when they don't know anything .URGH!
As far as the nurse calling with the results … yeah … that is a bit scary to do that to someone. Perhaps you can mention that. I would have been having a heart attack!
Yay for all being well and another little girl! Two girls and a boy make for good family dynamics. :)
My last two pregnancies I have done genetic testing also. I feel it is important to be mentally prepared as well. My doctor's words when he called me after the testing with Jack where something like this, "I know you would not consider an abortion but here are the possibilities..." it was very frightening. However, further testing and in-depth analysis showed he was going to be fine and the small problem he did have was cleared up before birth.
What a great post. You know, I never even KNEW people misread the genetic testing as only about termination plans, until after I was pregnant with my first. I always thought it was so parents could be mentally and medically prepared. It's just as you said, parents and their doctors need to prepare a solid foundation spiritually and physically for the baby and family. I can't imagine the shock and confusion of not finding out about a serious medical condition until after the birth.
I'm SOSOSO happy you're carrying a healthy baby and all is well!!! The ultrasound pics are great!!
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