Thursday, June 17, 2010

Today's Appointments

This morning I had two appointments, the first one being the ultrasound. I can honestly say that this was the worst appointment I've had since the one where we did the Amnio. To begin, it was a different Perinatalogist than we've been seeing, because apparently they switch offices that they work out of every so often. We had a man who led us through the ultrasound, showing us everything and pointing out what he was seeing. The new developments are that Ethan's heart appears to take up about half of his chest. In a normal baby it should be about a third of the chest. This means that either he has a small chest or the heart is larger than it should be. It also can indicate that lung development is not as it should be. In addition, he thought there might be a small hole in part of the heart, since there appeared to be a little gap in part of it as it was beating. Again, this is common for Trisomy babies. Other than that, nothing else of his condition has changed. He's measuring at about 2 pounds, which is almost half of what he should be. Basically that equates to measuring at about 27 weeks instead of 32.

The worst part of this appointment came after the ultrasound. The doctor asked me if I had any questions, and I again brought up the subject of delivery. I had been thinking a lot about this lately, wondering whether C-Section would be safer for Ethan or not. I really wish I had just kept my mouth shut and not asked anything. He began with, "I'm going to be upfront with you," which as we all know never means something good is about to be said. He then proceeded to tell me that doing a C-Section would absolutely be an unwise decision, because it is not going to change the outcome for Ethan, and would be riskier for me in the long run and on future pregnancies. Okay, I understand that. But what really hurt was when he brought up the term “meaningful life.” He basically told us that regardless of anything that is done to save him or repair his physical defects, he will not have a high quality of life. I then lost it and cried and told him that I’m aware of the abilities and disabilities that Trisomy babies have, and I’m willing to accept that my child will never be ‘normal.’ He replied with, and I quote, “ It’s not just a matter of being normal. These children often aren’t even aware of their surroundings. If all your baby can do is breathe, is that really a meaningful life?” And he later added, “ Would your time with him just be meaningful to you?” Talk about a punch in the gut! Who the hell is he to tell me what a meaningful life is?! Do I want my child to suffer? Of course not. But I also know that I want to do whatever I can to save his life. And to have him make me feel like that would be a selfish decision that would be benefitting me more than my child really hurt. Oh, and I almost forgot the last thought he left me with which was: "As you know, these babies have a high risk of not making it to full-term." REALLY?? Perhaps he thinks I'm not aware of this, but for Pete's sake, I'm already at 32 weeks! Do we really have to bring that up at this point? I've been trying not to focus on that, because I'm not sure how I'd get through each day if I have that weighing on my mind. Now I know that I’ve made this guy out to look like a jerk, but to be fair I have to say that I know he wasn’t trying to be. Besides those comments he was very honest with us, which I can appreciate. I certainly don’t need someone lying to me and telling me something that’s not true. I just think his method of delivery could use some work.

Thank God for my OB, who is so compassionate. He did give me the same general feedback regarding a C-Section, but at least the way he explained it to me was gentle. I’m so glad I had that appointment last, because it helped me calm down and start feeling a little bit better. But I’m still left with thinking about delivery. Part of me continues to believe that a C-Section, while maybe not life-saving, would give Ethan a better shot at survival. However, I do have to be honest with myself about his severe physical condition, and also look out for my own health. I know that the risks with C-Sections are now rarer than in the past, but I can’t help but feel like I would be that person who has complications in the future pregnancies because of it (after all, I’m that person going through this). Am I willing to put a future healthy baby at risk because of that? I really don’t want to be the one who makes the ultimate decision on this, so I’m going to try to leave it in God’s hands. I’m hoping He will send a signal to me through Ethan or the doctors of what’s the best thing to do. Can you pray that God will do this, and that no matter what type of delivery I have, Ethan will pull through?

Wow, this has been a really long post. Thank you for reading it, and of course I’ll keep you posted as anything else comes up. I have another OB appointment in 2 weeks, and an ultrasound in 4. Let’s hope my regular Perinatalogist is there for that one!



  1. I'm sorry that he was so insensitive to you. =( That's really not what you needed to hear right now. I am continuing to pray for you often. I know that you will make the right decision for what is right for you.

  2. Sheesh, I think that doctor has been taking notes from "House." If he really knew you, he'd know that all of the choices you've made have been selfless; not the other way around. You continue to be in my prayers.

  3. what a jerkface. i would fill out a survey on that guy, and call back and explain how you were treated to a patient advocacy worker or social worker at the hospital or something. that is absolutely not ok... honest or not, there is a way to be tactful and accepting of your patient's decisions. it's not his job to change your mind about something- just to give an opinion... the decisions are yours to make.

    can you request the other doctor- or only make appts at times he's there?

    we're always thinking of you guys and your little man... i pray for peace and comfort for your family...

  4. Ash~
    I'm so sorry that the doctor was so rude and insensative to you guys. You are one of the strongest people I know and it is plain to see that you deeply love Ethan.
    I agree that you should request not to have that doctor again and see if you can either speak with someone or file a complainant. While it is good to be honest - he was rude and unprofessional. By making light of this might help save someone else from hearing those same words in a similar situation.

    Keith, you, and Ethan continue to be in our prayers and thoughts daily.

  5. Ashley - We heard a lot of hurtful things from Doctors who well, don't have the best bedside manner. We were told all along that no matter what, they wouldn't consider a c-section. We had a great perinatalogist and she also brought up a good point that when we thought of memories of Grace we would want to look at our pictures and blankets, and that a c-section scar is sometimes very hard on the mommy to carry with her everyday. She said it may not seem like it now but she has seen it effect many mommies emotionally.
    In our case we were told, "no C-section, no matter what... your baby is incompatible with life" Then, Grace passed away 10 days before her induce date and when we went in and learned she was breech, guess what... ALL they were willing to do was a C-section!!! At that point Grace was already gone and we were totally against it. We had to check out of one hospital (pulling out IV's and all!) and check in to another that was willing to do a normal delivery. Unbelievable how these hospitals work!

    Another side note, if Ethans heart and lungs aren't developed properly, like our race, you may want to ask your Doctor about something our doctor told us - going through the birht canal helps them practice breathing and the first breath is critical. She said with a c-section we would run a high risk of her not being able to take the first breath because essentially, she wouldn't know she was being born. And the regular things they do to clear baby's throat may not work on a Trisomy baby.

    I don't want to scare you but I am sure that you are face to face iwth the reality of your situation and if you are anything like us, advice for other parents is welcome... I sure hope so at least.

    We will be praying for you all!

  6. Oy my goodness, I just saw I said race not Grace..oops!

    Another side note, if Ethans heart and lungs aren't developed properly, like our *Grace, you may want to ask your Doctor about something our doctor told us