Shandong and a Phone Call

Today I had lunch with J. We’d talked about where we might go out to lunch before (via text), but, we weren’t sure what we felt like eating. So, we decided I’d just come over and we would decide then. I spent the morning working on math homework (yuck), so, when it was time to leave to head to J's I was relieved.

When I arrived to her place, I was greeted by her dog, Levi. I’m actually allergic to dogs, so, J quickly shooed him away. He loves company though, so, he stayed close until the luster of my presence wore off. Since I hadn’t seen the photos of J's recent wedding or her honeymoon, we started off by doing just that. I was so happy to see the memories that her new husband and she made as they dedicated themselves to one another. She told me the story of how her Dad secretly flew to Portland to be a part of her big day. I wanted to cry, because, it reminded me of my Dad and how I’d lost him too soon. It made me think about my wedding and how although my elopement was beautiful and Alberto and I had an amazing time in Hawaii, it would have been better if my Dad could have been there. I still to this day weep when I think of how he never got to walk me down the aisle or how we never got to dance our first dance together. Anyway, back to J…it was beautiful, her story. Really touching and I was so happy that her wedding day was filled with such joy. J and her wedding party (the witnesses, her dad, and her new husband) even had an amazing dinner at one of Alberto and my favorite restaurants: Andina. One of her closest pals from California called and ordered them a bottle of champagne to celebrate with, too. How magical!

After the pictures, we decided to have Chinese. J had been to a wonderful place called Shandong and suggested we go there. I had been craving Chinese chow mein noodles FOREVER now. So, I was delighted to get to feed my craving. Off we went to lunch, and, we talked a lot on the way. About everything. About how I’d gotten an email from Mt. Hood Community College saying I wasn’t chosen to move on to the next round of the nursing application process. Oh well. We talked about my fears about finding out whether or not our baby had Down syndrome (seemed unlikely due to my blood work), Trisomy 18 or 13, or if the cystic hygroma he or she had was resolving or getting bigger. I remember feeling like I had a huge weight on my shoulders during this conversation. Like the weight of the world was sitting on my shoulders and on my chest, and, there was nothing that I could do about it. Nothing but wait. Wait to know if my baby was going to live or die.

 

Lunch was great – and, the chow mein was fantastic. The cherry pork J had was delicious, too. While we sat there and enjoyed our lunch, J and I talked about a lot of things. But, what resonated with me and what I couldn’t stop thinking about was her suggestion to call the genetic counselor and get all the questions I had in my head and the questions I had saved in my iphone note pad answered. To stop being scared and get the information for the questions I had, because, what good would not knowing do me? So, I decided I was going to take her advice and call.

I waited until the afternoon to call and I am glad I did. I had about 6 questions I wanted to ask and our genetic counselor Pat was more than happy to answer them. Below are the questions and the answers (as I remember them):

1. If the CVS comes back normal and no chromosomal abnormalities are apparent, how often would an ultrasound be done to check on the state of the cystic hygroma (should we choose to continue the pregnancy)?

Pat wasn’t sure of the answer of this question, but, would check with our perinatologist and get a definitive answer. I’d asked if it would be monthly. She said she imagined that it would be more often than that.

2. You’d mentioned that even if the CVS comes back with no apparent chromosomal abnormalities, we know there is something wrong because of the cystic hygroma. Is this re physical birth defects?

Even if everything was normal (a pregnancy where the blood work was normal and the cystic hygroma wasn’t present), there is always a chance that a fetus could have birth defects. But, at this point, we don’t know why the cystic hygroma is there and what it stems from. Thus, all the questions you have may not be able to be answered. The source of the hygroma may not be clear until after birth.

3. If the answer to questions number 2 is yes, what are the more common birth defects we may see from the hygroma? Are they things we can fix surgically?

It’s tough to know what the birth defects would be, because, we don’t know the cause of the cystic hygroma. If it’s isolated, it could mean just extra tissue at the neck, thus, a cosmetic issue. That could be dealt with via surgery. But, it could also be a non-isolated issue and lead to something like noonan’s syndrome (the principal features include congenital heart defect, hypertrophic cardiomyopathy, cardiomyopathy, short stature, learning problems, pectus excavatum, impaired blood clotting, and a characteristic configuration of facial features including a webbed neck and a flat nose bridge). Unfortunately, knowing the cause of the birth defect(s) as well as the nature of the defect(s) is something that could not be confirmed until after the baby is born.

4. What does the status of this pregnancy (and a possible termination, etc.) mean for additional pregnancies in terms of this happening again?

In most cases, chromosomal abnormalities tend not to happen over again; they are a product of improper dividing of cells during meiosis. If the issue is a gene specific defect (something the CVS will reveal), it’s a different story and it could possibility reoccur. 

5. Should we continue with this pregnancy, who will my doctor be? Will I see my original OB Dr. O or will Dr. B (perinatologist) by my doctor?

The decision is ours to make, and, how we proceed is completely and totally up to Alberto and I and is negotiable.

6. How long do we have to decide to terminate this pregnancy, should we not immediately choose to terminate (based on results from the CVS)?

If we were to continue on with the pregnancy, the 20 week ultrasound would be done in the perinatology department and they would likely order a cardioechogram to confirm that the baby does not have any heart defects. The outermost end-point for a voluntary termination is 23 weeks gestation.

I’m not sure why, but, speaking to Pat gave me some small amount of ease. It is not as though she told me anything that was particularly positive. But, it gave me some hope. I guess there really is power in knowledge, because, I felt like knowing the answers to these questions somehow helped. The best part was that Pat called Dr. Ba nd scheduled a follow-up ultrasound for us next Wednesday. That way, if the CVS results came back favorable, we could see the baby and check on the status of the cystic hygroma. She was also able to call the lab and they confirmed that the cells they were growing were doing their job and doing it well. There was a chance that we could have the results by the end of the week, but, more than likely, it would be on Monday. I am nervous about the results, but, the waiting is worse. So, it would be better to have them sooner rather than later.

Here’s hoping that we hear on Monday at the latest.