Family Infant Loss Lifestyle

An Amniocentesis And a Doctor With No Bedside Manners

In case you haven’t been following along and would like to read my story of infant loss from the beginning, you can begin with Finding Out There Is Something Wrong With My Baby. From there, you can navigate to the next post. For those of you who have been following along, I suppose the next step that I had to experience was a return visit to the Perinatologist, for an amniocentesis.

As I previously said, the Perinatologist’s office contained 4 or 5 doctors that I had to rotate between. Up to this point, I had only met one of the doctors who was great, in spite of the horrible circumstance we were meeting under. My second visit was with a woman whom had no children, and seemed to have no compassion or bedside manners at all. I’m sorry, but I believe there are certain fields where bedside manner is very key, and should be a requirement for such job positions. Having knowledge is great, but knowledge alone, without the manner to deliver that knowledge, can be dangerous. You will begin to see why I say this.

I don’t recall if my husband or my mom went with me to this appointment, but I don’t think I was alone. I think I learned my lesson from the previous visit. The main goal of this appointment was to have an amniocentesis done, so we could see if my baby girl had any chromosome abnormalities. The amniocentesis can be dangerous and is not recommended for every pregnancy. Using an ultrasound, a very fine, but very long needle is guided through the abdomen and into the amniotic sac. This is dangerous because about every 1 in 150 amniocentesises done, the pregnancy could result in miscarriage. If the baby gets very active, that could be scary too. With the needle, some of the amniotic fluid is removed, so it can be tested. The process was not too terrible, but wasn’t exactly a walk in the park either. More than pain or anything else, I think I was just very scared. Scared of the miscarriage, scared of pain and scared of the results. According to the doctors, we needed to find out if there were chromosome abnormalities so we would know how to proceed. This was my first truly high risk pregnancy (aside from having twins), so I followed their orders.

Before having the amniocentesis, my doctor talked with me about what to expect. She said the main things that they would be looking for in the results is a chromosome abnormality with autosome pair 21, which indicates Down Syndrome, or with pairs 13 or 18. Trisomy 13 or 18, which are similar to one another is where the baby has three copies of genetic material from chromosome 13 or 18, instead of the usual two copies. Because of some of the deformities that the prior ultrasound indicated, the doctors were leaning toward my baby girl having Trisomy 13 or 18. Down Syndrome was still a possibility, but I didn’t quite fit the norm.

Having never heard of Trisomy 13 or 18 before, here is how my doctor explained it to me. She said that it would mean my baby has no chance of living. Sure, she could be born alive, but she wouldn’t have much of a life, and she wouldn’t live long. If the amniocentesis indicates that my baby was a Trisomy baby, then I should just cut my losses and terminate the pregnancy.

WOW – can you believe that? Without even knowing what is really wrong with my baby yet, how do you tell a pregnant, concerned, emotional mother this, and in this way? Basically, she was telling me that if my baby was not going to be perfect, then I should terminate! The other thing is that so many times, ultrasounds are wrong, and babies are better than doctors think.

On the bright side, if my baby was not a Trisomy baby, then it would be full-court press. They would do all they could to keep my baby alive. Without even having any results, I felt like this was so much to process. Sometimes there is hard information that one has to deliver, but it’s all in the delivery. My doctor was very cold and clinical and didn’t appear to have a heart. I realize that may be harsh, but that is how I felt in that moment, and I think I still do.

You can read about how the rest of this day went, when I went home and was Held up in Bed full of Tears and Grief.

About the author

Emily Buys

8 Comments

  • I have prayed for you and your daughter. I learned about Trisomy after learning about the Rick Santorum family in the election primaries. His sweet little girl has this disease http://abcnews.go.com/Health/trisomy-18-kids-bella-santorum-rick-santorums-daughter/story?id=16090571
    I appreciate all the coupons you help us to find. I wish you and all your family the best and I included this site I saw in case you should like to see it. I hope you find some supportive doctors who really care. God bless.

  • I am sorry I missed the very first post and did not realize this is the anniversary of your loss, so my comment was not as I would have stated it had I understood that. I am so sorry for your loss. I still look forward to seeing a baby my mother lost in miscarriage in heaven someday. I am hoping for the sister I had always hoped to have although I love my brothers dearly. God bless and comfort you.

  • I just wanted to say that I am very sorry for your loss, and I have been reading your story. It is so upsetting when a doctor doesn’t have the bedside manner they should. When situations like this happen.
    I to went through an amino twice. 1st with my 2nd child, and they told me he might have down syndrome (but he didn’t he is now 14 and stand 6’1). And my 3rd child (they told me that he might have trysome 18 ( he didn’t, he is now 4 1/2 and doing great).
    But it is heart breaking when you lose a child. I hope you continue to heal from this, and I will keep your family in my prayers.

  • Thank you Marilyn! I’m so glad your babies turned out okay. That had to have been very frightening for you, until they were born healthy and strong!

  • I found your story through Pinterest of all places, I’ve been reading through your journey from the beginning (I realize these posts are from last year) but I felt compelled to comment on this part of your story in particular. I agree whole-heartedly that there are certain professions were a certain level of empathy is required. Being a perinatologist is one of those. I too had a horrid experiance with a perinatologist after getting an adverse fetal diagnosis. My son (born sleeping at 39 weeks) was diagnosed with Classic Potter’s Syndrome at 18 weeks gestation. At the very appointment we found out out baby had no chance at life our doctor told us to terminate our pregnancy as there was no point in continuing knowing our baby would die. To this day it enrages me! How could someone be so cold and callous as to tell someone their baby had a condition that was “incompatible with life” , that was a fluke at that, and instead of giving a family time to process tell them to end their pregnancy? Reading your story, my heart breaks for you and your family. It also angers me that someone else would have to experiance such horrible bedside manner as I did. Hearing that news changed my life forever, as I’m sure it did yours. I think there is a certain kind of person to be able to work in that field, to be able to break that devastating news to a family and be supportive. My OBGYN was that for me, I hope you were able to find that support somewhere else in your journey (I haven’t finished reading) I’m so sorry your family had to go through such a devastating diagnosis and loss. My throughts and prayers go out to you!

  • Thank you for your sweet note Heather. I’m so sorry that you also had to experience the poor bedside manner of a doctor. It really is such a shame. I don’t know how long it has been since your loss but I pray that you are able to have peace and love and comfort!

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