**this post was written in 2017 when the twins were 2. I have added some updated content to the bottom in 2020 as the twins turned 5!**
I’ve contemplated putting this story on paper many times over the last few years. A part of me wishes I could remember more details, but a part of me is thankful those details are forgotten. As our girls approach their second birthday this week I wanted to share their story. I wanted to share all of the fear and worry we went through for so many months in hopes of encouraging other parents who may be going through this and googling until their fingers can’t type anymore. So here it is.
Fall of 2014, Troy and I decided it was time to grow our little family to a family of 4. In December of that year we found out that we were pregnant and couldn’t wait for our first appointment! Early January, we sat there in my OB office waiting for that first sonogram. As she is scanning, Troy decides to “jokingly” ask if there was only one baby in there.. No lie y’all, he actually asked that. The sonographer turned to us and said um…. there are actually two! Y’all, our lives changed in a split second. I sat there and I cried, and I laughed, and then I cried again. Never in our wildest dreams did I envision us being parents to twins! She finished up her scan and was able to identify both baby’s heart beats and explain to us the different type of twins, mono/mono (identical in one sac, super scary and high risk), mono/di (identical in two sacs), and di/di (fraternal). She thought ours were mono/di, but couldn’t really make out the line that separated the two sacs (otherwise they would have been mono/mono and super high risk since their umbilical cords could tangle). A scan the following week confirmed that the separating line was in fact there and we weren’t in the super high risk zone.
With identical twins, they still do recommend that you see a high risk obstetrician in addition to your regular appointments. We had our first high risk appointment with ROC (Regional Obstetric Consultants) here in Jacksonville at around 13 weeks. They time your first visit for around then so they can run certain test that are more accurate during a certain time frame of your pregnancy. I think they check for several different things, but honestly, Troy and I went in completely oblivious. All we could think about was seeing our twins on the screen again!
This is where things start to get a little fuzzy, so bear with me. As the sonographer is scanning, they take time to go over each detail for each baby, but I did notice that she kept going back and measuring the same things over and over again. And then she recommended doing an internal sonogram as well for a better picture. I thought it a little odd, but didn’t ask questions. After she finished up, she told us to wait for the doctor to come into go over everything (the sonographers can’t actually discuss anything with you, good or bad). We seriously felt like we waited forever, at least 30-45 minutes. It turns out, they were waiting for their head doctor to come in and talk to us.
It turns out that the part that the sonographer kept measuring was the Nuchal Translucency (NT), basically the thickness of the skin behind their neck. Like I said, Troy and I were oblivious as to what they would be looking for that day, so we had no clue what this even meant. A “normal” NT size is under 3mm, both of our girls ranged somewhere between 5.5 – 6.5mm, I believe. Well into the “abnormal” range. As devastating as the next few hours (and months) were, I will have to say that we could not have asked for a better doctor. She sat there with us for almost 2 hours explaining everything over and over again to us, and answering any questions we had. Basically, we were told that with a high NT, we had the following statistics, a 50% chance of a chromosomal abnormality, 25% chance of a heart defect, 15% chance TTTS (Twin to Twin Transfusion Syndrome) and a TEN percent chance of healthy babies. I will NEVER forget those statistics.
We only had a few options moving forward and most of it was just an awful waiting game. They were able to take some blood to send off to the lab to rule out some things, but they explained with twins it couldn’t be 100% accurate. We also followed back up with our regular OB a few days later where she was able to tell us it was two girls. A part of me hates that moment. I hated that this was happening to me, I hated that this was happening to THEM and I hated that I wasn’t joyous about it (we had wanted two more girls), but in that moment I was scared and bitter. I didn’t do a special reveal or a party. We found out while wondering how much was going to be “wrong” with them.
Over the next few months, I had more doctors appointments than I could have ever imagined. I saw both my regular OB and my high risk OB. The blood work came back “OK” but was only able to eliminate a few things. Our next step was to make the decision if we wanted to do an Amniocentesis to test the fluid around the babies. This could only be done within about a 3-4 week period during the pregnancy and is high risk. It would also eliminate, or confirm, many unknowns. I know that this is a very controversial topic on whether someone should or shouldn’t do an Amnio. I will say that we decided to proceed with it and that unless you are put into that position, you will never know what a person is going through or why they make the decisions they make. Troy and I decided we wanted to be prepared for whatever was going to come our way. Again, it was a waiting game (of course over a holiday…) and it took about 7-10 days to get the results back. Everything was negative. Negative. We ruled out that HUGE 50% chance of a chromosomal disorder. I was probably 17-18 weeks pregnant now. I could breathe a little easier, but now we had to move on to our next hurdle, a heart defect.
Some of you know, that my nephew was born with HLHS, a heart defect, 3 years ago and has had two open heart surgeries. He has beat all the odds. So we KNOW what a heart defect could mean. And the worst thing is, we couldn’t do anything until I was almost 22-24 weeks pregnant. That was about 6 weeks of waiting. 6 weeks of wondering what was wrong. 6 more weeks of not enjoying my pregnancy. Finally, at 24 weeks we did an echocardiogram on both girls. Almost 2 hours of scanning, our same sweet doctor came in to tell us that everything was perfect with their hearts. Perfect.
Another major hurdle down, but I was still at the high risk doctor almost weekly. And it seems like every time we checked something off our “worry” list, something else was added. This is where it gets a little fuzzy, but every time we had an ultrasound, something else “small” was found. Everything from an enlarged bowel, a cist by the heart, to excess fluid, and I’m sure there were more, but I seriously dreaded every single appointment.
Day by day, we prayed and cried. Finally, around probably 27-28 weeks, we had cleared EVERY SINGLE HURDLE. Every single bad statistic. Our girls were healthy and growing. I could breathe. I don’t think we even picked out names until I was 30 weeks pregnant. I couldn’t. I couldn’t name them knowing something may happen to them. I was in denial. Around 30 weeks Troy and I picked out Emily Katherine and Sarah Elizabeth. I was able to enjoy 7 weeks of my pregnancy before they were delivered via c-section on August 6, 2015. Healthy. Perfect.
We defied every single odd that the doctors gave us. I don’t blame the doctors. I don’t think they were wrong. It all started with their high NT numbers, which in their statistic show those odds. They were trying to help prepare us in case those odds were in fact correct. However, after so many hours of googling, so many parents have dealt with the exact same thing. High NTs, bad odds, and then healthy babies. I mostly blame technology. We are so advanced these days, that it shows every slight imperfection of these beautiful babies while God is still molding them to grow and be perfect. A huge part of me wishes that our sonographer wouldn’t have found the second baby in our first ultrasound, we wouldn’t have been sent to ROC and we wouldn’t of had another ultrasound until 20 weeks (and then been realllly surprised to find two!!) and by then, half of the “issues” they found would have already been resolved without us even knowing.
So I’m going to wrap up with this, even going through this experience, I don’t know what to say to a parent going through something similar. There is nothing you can say other than sharing your story and let them know you’re praying for them and that they’re not alone.
Now off to celebrate these sweet, sweet girls turning two (2016)! Check out their Sweet Shoppe first birthday party here (2015)! This year, we’re going to take it easy and just have a small cookout with family, no big party for us, just enjoying these sweet babes.
And if this post wasn’t long enough, here are some more pics of our sweet miracles!
**UPDATE** It has been several years since I wrote this post sharing our story with the world. It has blown me away with the traffic and responses I have received on this post with moms, dads, grandparents and more that are going through the EXACT same thing during their twin pregnancies.
I know that it is not an easy road while you’re in it, and I honestly feel like over the last 5 years I have blocked it out some. But I am thankful that I got my story down on paper to help remind me how far we have come and to help give a little bit of comfort to anyone out there reading this.
Today (2020) the girls turn 5 years old. It seriously blows my mind that this story is 5 years behind us and these girls, while the craziest I have ever met, are still perfectly beautiful and healthy.
Hang in there, sweet friends. I’m saying a prayer for you.
Now for some updated pictures over the last few years!
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To God Be The Glory!! Great Things He Hath Done!! Love you sweet Heather. Thank you for sharing! We were praying as a lot of other people and the Lord heard us!!
Thank you so much for your story, we are going through the same thing now, but only one babe has a high NT, reading this gave me hope that we can also defy all odds, thank you again for sharing your story and your beautiful girls.
Hi Angie! I am so glad that you found this story! I’m sure it’s such a stressful time right now, but I will be praying for you and your sweet babes, especially the one with the high NT. Please keep me posted if you can!
Thank you so much this is really helping my wife and our 3.5cm measurement in our 12 week ultrasound of our twins put us to tears
Virgil, I am so sorry to hear you’re going through this. Praying for you, your wife, and your sweet little ones. I’m glad you found this post and hope it is giving y’all some comfort.
We are also going through the same thing but only one identical twin has a high NT score. Did the NT ever go down? Did anyone say it could have been the beginnings of TTTS?
Hi Sarah! I’m so sorry you’re going through this, but I’m so glad you found this post. The tricky thing with the NT is there is only about a 2 week window (I believe) where that can accurately calculate the size. Once they hit a certain week (maybe 14 or 16 weeks) they won’t measure it anymore. So I’m honestly not sure if it ever went down. It really didn’t matter, since they saw it once, that was really all the needed. They gave us a 15% chance of TTTS with both girls having high NTs, and just would monitor their growth to rule out TTTS, which thankfully was never an issue for us. Please keep me posted if you can!-Heather
Thanks for replying! Our combined screening results came back yesterday and now they are saying both babies have a 1 in 50 chance of downs even though one baby had a NT score of 1mm and the other 5.8, I just don’t get it!
Going for a detailed scan and CVS today. Fingers crossed for a good result.
Just hoping it isn’t something else if it’s not downs.
Hi Sara and Angie! I found this post because I am going through the same as many! Does anyone have updates on their babies? I am so hopeful and curious of others situations. It is so rare!
You have a beautiful family. Congratulations! I am 13 weeks pregnant and recently learned that the baby’s NT measurement is 5.8 (at 11 weeks 6 days). We’re in the process of waiting for CVS results and each day of waiting is a struggle. I’ve certainly never experienced this much anticipation and worry. Hearing your story is so, so helpful. Thank you for sharing.
Thank you so much for sharing you’d story. We had our NT measurement done at 12 weeks where we also found out that we were having twins. It was a very stressful time and I feel that I can’t really relax during my pregnancy (I’m now 17 weeks). Just had another scan and the consultant said that everything he could see was fine. In the back of my mind is the one high NT (one twin was 4.00mm) from the first scan.
We have chosen not to do the invasive tests due to the risks involved.
I’m so glad that you have shared your fears and worries as it feels like nobody else is going through the same thing and google is a scary place.
I’m praying and keep believing that they’ll be okay and if they aren’t we will deal with what ever comes our way with God’s help.
My Niece in India is in similar situation now with NT 3.2 for one baby and another with 1.7 during scanning results for 13 weeks checkup. My Sister and Niece both are scared as one baby has NT 3.2 and to give them some relief I was googling and ‘God’s Grace’ found your story. Your understanding and explanation shows how mature and talented you are. Particularly this one ‘I mostly blame technology. We are so advanced these days, that it shows every slight imperfection of these beautiful babies while God is still molding them to grow and be perfect.’ This shows the faith you have in God. This is what most of us fall short of these modern days. I really appreciate your kind words and pray for you and your family’s well being and hope your children will carry your values and lead better life. I told my sister and niece about your story and now they are much relieved and I stressed on importance of having faith in God. I will keep you posted with the progress and final outcome.
Thank you SO much for sharing this. I am so glad you found this post. I can’t tell you what your kind words mean to me. It was definitely a very scary time for us, but God carried us through it and the girls are now 3 years old and perfect! I am praying for your sister and niece and would love for you to keep me updated.
i am expecting twins and about to have my NT scan in a week hence i am so glad and thankful i found your post!! now i can at least try to stay positive and ignore my daily fears, even for awhile.. thank u!! your babies are beautiful!
Hi Heather! We just got home from our NT test, I’m 11weeks with twins, one measurement was 1.5 and the other was 3.1. We did decide to have the CVS test done, got an appointment same day. Waiting on the results. Your post was the first one I read. I am so thankful you decided to share your story and am so happy for you and your family. I’m praying and trying to stay positive. I’m not gonna google it anymore but rather cling to your story and grace of god. Thank you again, sending much love -Nikki
Hey my twins also measured same 1.5 and 3.1 , could you pls tell me how are your babies now… this really helps me a lot..
Thank you so much for your brave story. I appreciate this post more than you could ever know. I’m 11 weeks pregnant with surprise mono/di twins at age 40 after a loss at 22 weeks this fall. We skipped the nuchal with my angel boy and the doctor said after he passed that he may have had fluid behind his neck. I have my NT for the twins next Friday. I’m so worried and anxious and this post made me feel peace for the first time.
Thank you so much for sharing your story. I was told yesterday that my 13 week mono/ di twins have “thick necks”. Unfortunately the news was not delivered by my regular obgyn and I didnt have any of my questions answered. It is 5 AM and I have slept 1 hour all night crying and agonizing over this. Your story gives me hope. Thank you.
God bless you and your wonderful family!! What beautiful girls you have!! Thank you for sharing your great story?
Thankyou for sharing your post and personal experience. It brings joy and also hope. I am devastated with high NT scan but I have faith in God. Your blog made me hopeful. As you wrote in your post, God is still taking time to create these beautiful babies while technology shows high NT scan. I am very happy for you and your girls that it all turned out well. God bless you!
I’m so happy to have found this post and read all of the feedback! I found out today @ 11 weeks that Twin A is 3mm and Twin B is 3.6mm. I did the blood work and may consider the CVS test since I’m earlier than 14 weeks depending on the results. However I’m very positive and hopeful and this post helps a lot. Thank you!!!!!!
Just wanted to thank you for sharing your story.
Our 13wk scan with MFM showed a “significant discordance” at 3.5 vs 1.8 for our mo-di girls. Reading more about it over the last couple days, including your story, has given me a lot more hope than what I left the hospital with.
I read your story in January when I we had our NT scan showing extra fluid in one twin. I keep coming back to it because week by week, we keep having the same circumstances you did! I am now 24 weeks, with the beginnings of Ttts. Your story is so much like ours, it’s insane. Thank you for sharing your experience and giving hope to other twin moms.
P.S. our girls have similar names, Emily and Eliza ?
Thank you thank you thank you! For sharing this. I need hope and this is exactly what I want to hear!
Greetings from India, I recently discovered your post as I was scrolling for some hope. We are in our 16th week of pregnancy & high NT of 3.8mm was reported during 13th week scan. We had CVS done & luckily all chromosomal tests have come out normal. Awaiting first anomoly scan.
I would like to know if doctors mention any odds on the neurodevelopment of the babies postnatally. I mean even when karyotype & scan results are good, do these babies with high NT have any increased risk of neurodevelopmental delay in childhood?
Hi Nandini! I am so glad you found this post and that it has been a comfort during these time for you! I remember all too well the stress. That’s amazing that everything has checked out good so far. In regards to any postnatal delays, the doctors have never had a concern/mention of it and our twins just turned 6 and are right on par with where they should be and no delays are issues that we have seen arise. In the small research I did on the topic, the odds were the same has babies with “normal” NTs, there didn’t seem to be any increased risk as they grew older!
That’s very kind & considerate of you to have replied in such short time. Thanks for reassuring us with your experience. This is our second pregnancy & with our first child 5 year old son, everything from pregnancy to upbringing was a cake walk. So this time when the journey went downhill with High NT & scary CVS, we felt for a moment if it was worth to take all this trouble, if it was worth to go through weeks of uncertainty, but seeing photos of your twin angels filled us with courage and hope. Thanks for making a difference in our lives.
Thank you so much for this story. It’s made me happy, sad, relieved all at the same time. I’m currently pregnant with twins. One twin had a normal NT and my other twins was 3.8mm. We weren’t fortunate to have a good doctor though and were just sent home to figure it out on our own. I’m still waiting for blood results and am terrified. Your story has given me some hope though so thank you. Your girls are beautiful, you must feel blessed after the pregnancy you had!
Thanks again sent from England.
Hi Kayleigh! I am so, so glad you found this post and that it has brought you some comfort during this uncertain time. I know it’s not easy, but trust that the Lord has a plan for those wonderful babies of yours. I’m sorry the doctors weren’t much help, but I pray that you have better news and understanding soon!
Thank you for this, my NT was 3.3 for one of the twins. I am feeling every emotion you shared . I am so glad everything turned out ok. Praying for the same result
Hi Nina, I am so glad you found this and am praying that works out well for your sweet little ones!
Thank you for sharing this… from one twin mama to another… this gives me hope. Thank you thank you thank you.
Thank you for sharing your story! it really means so much to me, cus i am going through the exact same thing with many others who leave comments. I’m having another scan tomorrow, hope that i can cross another hurdle.
Thank you for your story. It has given me such comfort. I went to see my MFM doctor on Friday and they found baby a has a NT measurement of 1.6mm and baby b has a measurement of 3.6mm. Because it was a Friday appt, I have to wait till the hospital office is open Monday to schedule the CVS which will probably be on Tuesday. I have identical Mo/Di twins. I’m praying my babies are ok. Praying so hard. My NIPT test did come back fine. So I hope that’s good.