While our surrogate’s pregnancy has been uneventful and very healthy, we haven’t been quite as lucky with my pregnancy. Mr. Starfish and I opted to do CVS testing at 12 weeks on my pregnancy. We received a call back the same day informing us that the preliminary markers for the most common chromosomal abnormalities were clear, and we also received the beautiful news that we were expecting a girl. We were thrilled and relieved, and we also thought that was the end of that story. The genetics counselor had told us before the procedure that the odds of uncovering other chromosomal abnormalities in the more detailed analysis were very low, and that if we got the “all clear” signal with same-day results, that we were unlikely to be called back again with further news.
So imagine our surprise when two weeks later I received a call from the genetics counselor. She told me that the more detailed analysis of my CVS showed three copies of chromosome 7. This was called “trisomy 7,” indicating that there were three copies of the chromosome when there should have been two. She said that this particular trisomy is “incompatible with life” and so I needed to have an amniocentesis immediately to determine if the trisomy was restricted only to the placental cells (which is what the CVS tested) or if it was also in the amniotic fluid (which would indicate that the baby also had the abnormality).
I was terrified to receive this news. Although in hindsight I probably overreacted, I immediately jumped to the conclusion that I could miscarry at any single second. The genetics counselor had explained that a baby who had this abnormality could not survive and that the pregnancy would naturally terminate, and that if the baby did have this abnormality, it was surprising that a miscarriage hadn’t already happened.
I went home that night and totally lost it. I retreated to the couch and curled up in a little ball and sobbed so hard that our cats became scared and stared at me with huge wide eyes. Meanwhile, Mr. Starfish retreated to a quiet corner in our condo to do research on trisomy 7. After 90 minutes of my hysterical sobbing, Mr. Starfish came to the rescue and showed me several research papers that indicated that the odds were basically zero that the baby had trisomy 7; the fact that the baby was still alive was nearly enough proof that the trisomy 7 was restricted only to the placenta because babies had never been observed alive this far along in a pregnancy and also have trisomy 7.
Thankfully, this research proved to be correct when we went in for the amniocentesis. The baby’s cells did not have trisomy 7. We breathed a huge, and I mean HUGE, sigh of relief. We also finally found the humor in the situation when the doctors and nurses and genetics counselors said repeatedly that “this almost never happens.” We heard that phrase so much during our infertility battles that we practically considered it our motto. So of course we were not surprised to hear it again!
While we were relieved, we also had to come to terms with the fact that the placenta remained abnormal. It had too many chromosomes, and there was a risk that the baby could be endangered if the placenta didn’t do a good job because of that abnormality. In particular, we were warned of “Intrauterine Growth Restriction” (IUGR) where the baby would not grow normally. This would only become apparent later in the pregnancy.
Because of these risks, I was immediately deemed a high risk pregnancy. This was obviously scary, but Mr. Starfish and I consoled ourselves with studies that showed many babies with trisomy 7 present in the placenta were born perfectly healthy. As my pregnancy progressed, and we got further away from all of the drama of the CVS and amniocentesis, and everything appeared normal in my measurements, we got comfortable. We felt safe with the pregnancy.
This changed a little bit this week when I went in for a 28 week ultrasound and we heard that our little girl is measuring quite small. While her overall measurements place her in the 30th percentile, her head is measuring only in the 4th percentile, and her abdomen and femur measurements are only in the teen digits. With Mr. Starfish and I both above-average in height, we can’t attribute her small size to genetics. The most reasonable conclusion in our minds is that the abnormal placenta is already restricting our dear baby girl’s growth.
While our doctors and nurses assure us that there is nothing to worry about at this time, Mr. Starfish and I are natural worriers. I have to admit that I am struggling right now with a good amount of anxiety and fear. I particularly hate the internet this week because I’ve turned to it to understand our baby’s measurements and I’ve found the scary mention of microcephaly and other serious disorders. I’ve vowed to myself to try to stay off the internet right now and trust in my doctors and nurses instead.
I also have to put trust in our baby girl. This is the miracle baby who found a way to attach to my uterus when countless other embryos failed. This is the strong baby who kicks me daily to remind me that she is a fighter. This is the active baby who is always putting on a show in ultrasound exams, bouncing around and being described as “wild” by more than one ultrasound technician. My heart tells me that this baby girl is going to once again take us by surprise, put on some extra weight and inches, and get out of these small growth percentiles. And when she does, and the doctor says “this almost never happens,” I will smile. Because that’s our girl, and that’s her motto.
persimmon / 1436 posts
Your last paragraph is so beautiful! I will keep my fingers crossed for your sweet baby girl–you have gone through so much!
wonderful kiwi / 23653 posts
Many prayers for you! Your last paragraph really moved me… I hope there will be good news at the next scan! I can’t imagine all the stress you went through with all the diagnoses that have. One through! I just want to give you a big hug!
pomegranate / 3845 posts
We were diagnosed with IUGR (and I know several other bees have been too) and had a healthy baby boy. He spent a week in the NICU because he was small for his gestational age and also a preemie, but after a week, he came home and has had no lasting health issues. People are always shocked when they hear his birth weight because he caught up very quickly and has always been really physical. He’s now almost 3!
Your baby girl is going to be fine, she’s a fighter! I hope others chime in with their IUGR stories as well. You’ll be in our thoughts!
blogger / nectarine / 2043 posts
I was induced at 36 weeks because my girl wasn’t growing on targets, and was diagnosed with IUGR after she was born, even though there were plenty of early markers for it that everyone just wrote off to my husband and I being short/small. Baby C was 4 lbs 6 oz at birth and spent 10 days in the NICU while she gained a bit of weight, and these days is a vibrant, energetic, crazy smart 2 and a half year old. She’s still little for her age but it doesn’t seem to stop her from being full of awesome so I’m holding my fingers and toes crossed for you. You’re going to do great!
blogger / persimmon / 1225 posts
You’re a great writer and a great mom already! Thanks for sharing your story. I’m sorry you have to deal with even more stress but baby girl sounds awesome already! Hoping she keeps on growing!
apple seed / 1 posts
I had to be induced at 36 weeks because my son had been falling behind in growth and the doctors were worried that the blood flow from the placenta was not ideal. He was diagnosed with IUGR after he was born. It was very scary the weeks leading up to the induction. I had to get ultrasounds every week towards the end and every time I dreaded what the doctors would say. He was born 3lb 11oz and had to spend 2 weeks in the NICU. We were blessed that he had no breathing or any other medical issues and only had to gain weight. He is now a very active 6 month old. I hope your next scan brings better news!
guest
WTF that genetic counselor who called you was totally wrong and should be aware of what a grave mistake she/he made. You cannot do that to a person!
It sounds like you guys have the right attitude, this is definitely the marathon journey just one step at a time!
cherry / 196 posts
I am keeping you and that “wild” baby of yours in my thoughts. Everything will turn out fine! Keep kicking and growing little wild child.
grapefruit / 4923 posts
what a roller coaster, on top of everything you’ve already been through! love that your little girl is “wild”.
blogger / pear / 1563 posts
Oh man. After all you’ve been through that is rough to get news that just makes you anxious. Praying she grows and grows and this happy girl continues to beat all the odds! Your last paragraph is so great!
wonderful olive / 19353 posts
Loved, loved, loved, loved your last paragraph!
DS was diagnosed with IUGR even though ultrasounds couldn’t pinpoint what was wrong. Everything seemed to work and appeared fine. Post-birth, we learned my placenta had already began calcifying and stopped doing its job, hence the small baby. I was induced at 37 weeks due to low amniotic fluids and small baby. He’s still small for his age, 2.5, but he’s just like any other feisty, strong-willed 2.5 year old!
I’m currently pregnant with our second, and she too is growing behind the growth curve. I’ll be induced at 38 weeks. We’re hoping once she’s born, we’ll have more insight as to why all my kiddos are small! I was 8lb something at birth and DH was average size so it’s apparently not genetics!
blogger / apricot / 439 posts
@Finfan and @snowjewelz and @princessandthebee and @DenverMom and @edelweiss and @Mrs. Pinata: Thank you so much for your kind thoughts. It helped me so much to write out my thoughts on this issue, and the support that I receive on HB is also incredibly helpful as I progress through this time in the pregnancy.
@Applesandbananas and @Mrs. Carrot and @starhorse and @Alivoo01: It is so helpful to me to hear about stories like all of yours. It helps me to keep my hope up, and also to know that I’m not alone. Thank you for sharing with me!
guest
I just want to say that I’m sending good vibes your way. Sixteen years ago when I was pregnant with my fifth child, 11 years after our fourth child and at 38 years old, I got similar results. I was diagnosed with trisomy 12 (three copies of chromosome 12) after my CVS test. I had a great perinatologist and he said he was 99,9 percent sure that it was confined to the placenta and we would have to retest in a few weeks with amnio. Those weeks and waiting for the results were sheer hell. He was right , it was confined to the placenta. My pregnancy was watched by both the perinatologist and the obstetrician. I had regular ultrasounds and non stress tests to watch for UGR. I was induced at 37 weeks and was told that I could expect her to be between 4 and 5.5 lbs. Well she weighed 5 lbs, 3.8 oz which wasn’t bad considering that my biggest of my first four at full term was 6.6 lbs. She turned out to be perfectly healthy. She’s now a totally normal fifteen year old. It’s strange because I’ve never come across anyone with a similar diagnosis. So please know that I’ll be rooting for you and your miracle baby.