Sunday, September 23, 2012

Nuchal Translucency Test

if you are somewhat new to my blog, or do not know our story very well, you may have NO idea what that title means. a nuchal translucency test is part of an ultrasound, specifically taken between weeks 11-13 of gestation, to check for certain birth defects. the nuchal fold is on the back of a baby's neck. in a normal test, that nuchal will be 3mm or less. if a baby has a nuchal fold measuring more than 5mm, there is cause of concern for certain birth defects. this is the test that changed our lives almost two years ago. the nuchal translucency test was the first indicator that our sweet Charlotte was very sick.

peter and i got to see our sweet baby for the very first time during this ultrasound. we had actually been delayed a week due to a horrible traffic accident that made us miss our appointment. anyway, we saw Charlotte at 13 weeks on the screen...moving around, heart beating, looking totally normal to our unknowing eyes. we soon found out that not everything was ok. a doctor came in did a few more rush movements of the ultrasound thingy (nice terminology, huh?) and told us that our baby had "a nuchal fold of 15mm, she has severe disabilities". most of you know the rest of the story. if not, here is a link to the main parts.

through our whole pregnancy with Charlotte, i did copious amounts of research. i researched nuchal tests, botched nuchal tests, anything and everything with Turner's syndrome, anything and everything with most chromosome abnormalities, survival rates, how to raise a child with disabilities, EVERYTHING!! i think i drove myself crazy trying to figure everything out. that has led me to probably knowing and worrying about too many things now. i know, according to my doctors and previous ultrasounds, that i should have nothing to worry about with the LOtwins, but that doesnt matter. i know, through my own research and previous experiences, that even when things can look great in the beginning, they do not always end well...they can get worse.

tomorrow, peter and i are going to see our twins again...and they will be having a nuchal translucency test. again, this is not much more than a hi-tech ultrasound. they measure the fluid on the baby's neck, just like when they take their "head to rump" measurements in any and drag a mouse button. i have been almost fearing this ultrasound, this day, since we were told we were pregnant. i fear that we will be, once again, told that there is more than 3mm of fluid on one of both of the babies. that we will be forced to hear the awful words..."your baby is not quite right".

i know many have been in my shoes. and i know that rarely is someone given bad news more than once. the chances of us ever having a second baby with Turner's syndrome is very near impossible. but i also know that there are chances. there are chances for other abnormailities. i will love my children regardless. i know that each child is made in God's image...that He does not make mistakes. but, i just dont know what will happen tomorrow, and that is what i fear.

just wanted to share a few pics, so you know what i am talking about with an elevated nuchal fold test.
above is a picture that i found on the web that shows a very clear example of both a normal and abnormal nuchal. you can see in the grainy ultrasound picture (abnormal) that there seems to be a bubble behind the neck. it doesnt say how thick this nuchal was, but obviously well above 3mm.

this is Charlotte. in her very first picture! i know that it is hard to see...she is face up, head on the right side, legs on the leg side of the picture. if you look closely, you will see her bubble. in this shot it was measuring at 15mm. i was 13 weeks and 1 day.

this is Charlotte at 15 weeks and 5 days. her second picture. she flipped here. so her head is on the left face up and legs to the right. you can see her nuchal looks more like a part of was. it was growing very rapidly. just two weeks later it was up to 24mm. the fluid was now overtaking her whole body, which is why her torso looks very was and all that fluid was already beginning to shut down other organs in her little body. i am not trying to be gruesome, so gain pity. i am merely showing you how things went for us and for Charlotte. to help those that need it, understand more about this test and what can happen.

i will never forget those days. seeing our baby. knowing she was ours but that there was nothing we could do to help her. the pain is just as real today as it was then. but we also have hope. hope for our two babies growing again inside of me.

please pray with us as we go tomorrow. the appointment is at 1pm. i know that God already has all of this worked out...that we are all in His hands. i am praying for peace for myself and peter, for a worry free night tonight, for healthy LOtwins, and for grace as we interact with people tomorrow that do not know us, Charlotte, or these new babies.

thank you for letting me share more of my Charlotte with you!

blessings, ALo


  1. ALo- I will be sending you, Peter and the twins all the light I can muster tomorrow. although we've never met or even emailed, I think of you guys often and am firmly on the LOtwins team! GoLo! :) xo

  2. Will pray for your precious babies, as well as for you and your hubby to have peace as you wait to hear those words "healthy babies". :)

  3. Alo and Peter I am sat at my desk with a lump in my throat having read your story about Charlotte. I have just been for my nuchal test and am awaiting the blood results so decided to google what the norm is for the fold when I came across your blog. I am so terribly sad and sorry for your loss. I miscarried my first baby so I understand what it feels like to have expectations, hopes and dreams for the life within in you only to have them shattered. With Gods blessing we have gone on to have two very healthy boys and I am praying that this baby no.3 will be blessed with the same fate. I would love to hear that all went well with the twins and pray that they have taken away the sadness that Charlotte left behind. God bless.