I am 20 weeks pregnant with a beautiful baby girl named Aubrey. Up to this week, our story has been very "normal", very "traditional". Last week that changed....
But first a little about us. I am married to a wonderful man named Josh. He is an investor/entrepreneur and I am an Ob/Gyn. We have a precious, crazy, fun-loving 2 year old named Kye. I just finished my residency in July. We moved to a new town near Josh's family and I entered into an amazing private practice. Life was good. We decided we were ready to expand our family.
We were blessed in that we got pregnant right away. I found out in late October that we were pregnant. As an Ob/Gyn, I am always cautiously optimistic until we have seen a heart beat and gotten further along. But all went perfectly...
As an Ob/Gyn, I did ultrasounds every week, just for fun! One of the perks of the job :). Around 15-16 weeks (after we found out it was a girl), we started noticing her legs looked short. But, Kye, Josh and I all have LONG torsos and very short legs...so I kinda blew it off and joked that she was just like us! However, once it was 19 weeks and she was only measuring 14-15 weeks on her little legs...I started to get worried. My sweet partners reassured me but suggested I go to see a high risk specialist, just to be safe. We all convinced our selves we were just getting bad views or just bad at ultrasound...haha.
To make a long story a little shorter, I called my MFM buddy in New Orleans and he got me hooked with the quickness to UAB MFM (high risk). THEY WERE AMAZING!!!!
What they found was that Aubrey girl had very short arms and legs...less than the 1% for her age. In addition to being short, her long bones (femur, humerus, etc) were also slightly bowed or curved. Also, her chest is small, less than the 20%. Everything else looks great on her. Her heart is beautiful. Her brain is normal. Her abdomen and all its organs look great. He tells us that this picture is consistent with a rare skeletal dysplasia called Thanatophoric Dysplasia. He also told us that his gut is that this is a lethal anomaly.
Wow. Lethal anomaly...that hit me in the gut. I had pretty much convinced myself that their was something going on, but I was thinking Down Syndrome, Achondroplasia (non-lethal dwarfism). I had NOT thought I was dealing with something lethal.
Why is it lethal? Because not only are her limb bones very short, so are her chest bones. Her chest will likely not get big enough to allow lungs to grow to the size needed to support her outside of me - Hypoplastic lungs, for my medical people. Now he (MFM) isn't 100% sure that Thanatophoric dysplasia is the specific type of dyplasia, but he IS sure its a skeletal dysplasia and there is no use in an amniocentesis for further genetic testing. We will be able to determine the course of action by her ultrasound. He stated that if her chest size got below the 10th%, we can almost be assured that she will not have enough lung tissue to sustain her outside of utero.
SOOOOOO...that is where we stand. We will have a repeat ultrasound in 3 weeks to determine if she is growing and by how much. He thinks I should carry her to term. She is happy as a lark in there. He thinks she will be born alive and die shortly after.
Psalm 139 has become my anthem:
11 If I say, “Surely the darkness will hide me
and the light become night around me,”
12 even the darkness will not be dark to you;
the night will shine like the day,
for darkness is as light to you.
But first a little about us. I am married to a wonderful man named Josh. He is an investor/entrepreneur and I am an Ob/Gyn. We have a precious, crazy, fun-loving 2 year old named Kye. I just finished my residency in July. We moved to a new town near Josh's family and I entered into an amazing private practice. Life was good. We decided we were ready to expand our family.
We were blessed in that we got pregnant right away. I found out in late October that we were pregnant. As an Ob/Gyn, I am always cautiously optimistic until we have seen a heart beat and gotten further along. But all went perfectly...
As an Ob/Gyn, I did ultrasounds every week, just for fun! One of the perks of the job :). Around 15-16 weeks (after we found out it was a girl), we started noticing her legs looked short. But, Kye, Josh and I all have LONG torsos and very short legs...so I kinda blew it off and joked that she was just like us! However, once it was 19 weeks and she was only measuring 14-15 weeks on her little legs...I started to get worried. My sweet partners reassured me but suggested I go to see a high risk specialist, just to be safe. We all convinced our selves we were just getting bad views or just bad at ultrasound...haha.
To make a long story a little shorter, I called my MFM buddy in New Orleans and he got me hooked with the quickness to UAB MFM (high risk). THEY WERE AMAZING!!!!
What they found was that Aubrey girl had very short arms and legs...less than the 1% for her age. In addition to being short, her long bones (femur, humerus, etc) were also slightly bowed or curved. Also, her chest is small, less than the 20%. Everything else looks great on her. Her heart is beautiful. Her brain is normal. Her abdomen and all its organs look great. He tells us that this picture is consistent with a rare skeletal dysplasia called Thanatophoric Dysplasia. He also told us that his gut is that this is a lethal anomaly.
Wow. Lethal anomaly...that hit me in the gut. I had pretty much convinced myself that their was something going on, but I was thinking Down Syndrome, Achondroplasia (non-lethal dwarfism). I had NOT thought I was dealing with something lethal.
Why is it lethal? Because not only are her limb bones very short, so are her chest bones. Her chest will likely not get big enough to allow lungs to grow to the size needed to support her outside of me - Hypoplastic lungs, for my medical people. Now he (MFM) isn't 100% sure that Thanatophoric dysplasia is the specific type of dyplasia, but he IS sure its a skeletal dysplasia and there is no use in an amniocentesis for further genetic testing. We will be able to determine the course of action by her ultrasound. He stated that if her chest size got below the 10th%, we can almost be assured that she will not have enough lung tissue to sustain her outside of utero.
SOOOOOO...that is where we stand. We will have a repeat ultrasound in 3 weeks to determine if she is growing and by how much. He thinks I should carry her to term. She is happy as a lark in there. He thinks she will be born alive and die shortly after.
Psalm 139 has become my anthem:
11 If I say, “Surely the darkness will hide me
and the light become night around me,”
12 even the darkness will not be dark to you;
the night will shine like the day,
for darkness is as light to you.
13 For you created my inmost being;
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
God always knew that this was going to be Aubrey's story. Pray for peace for us. Pray for clarity in her prognosis. Pray for miracles. I will be updating this blog as we learn more...
Thank you for including us in your journey. Aubrey is adorable!!! I have and will continue to pray for you guys, and send a great big hug your way! ~Jackie
ReplyDeleteThe right side of her ultrasound picture, looks like she has a Guardian Angel.
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ReplyDeleteI was just thinking about you when I pulled up facebook. No offense but I don't usually sit around idly thinking about you, lol. :D I just started thinking about you and feeling concern and I don't think there was even a pause in those thoughts before I saw this. Now that I say that though I was thinking about you Sunday night too - we were praying for Brother John - and for his family among other things - and I thought how funny, because although I haven't known you long I've been praying for you for years whenever I pray for our church staff and each of their family members.
ReplyDeleteSo I share all that because I see significance in those small whispers to my soul and although this a subtle one, I recognize it to be (based on other times I've seen or experienced them more obviously and personally) God speaking jnto a situation and saying to YOU, "see, I really AM here in this - with you - working - placing you on others hearts, preparing hearts in advance for this journey that I've already known about so they can come along side you. I really do go before you and really am still aware and in control."
I believe prayer moves mountains. I believe in miracles. I'm praying in full faith for that but most of all (as I know you'll agree) I pray with thanksgiving that He chose to write a story about a soul named Aubrey Gates - a story that He deemed perfect and complete and good and full whatever it may contain in its pages. He is so good and loving and worthy of my trust that I know that if not now then later we'll agree He got her story - all of our stories - just. right. I pray with thanksgiving for that inexplicable, priceless, miraculous peace He gives that will quiet your minds and hearts so that you can just REST in Him and "be still and KNOW He is Lord."
You guys are loved and have many who will be walking through this and bearing this weight on their hearts with you and I pray it makes the weight on yours feel lighter as a result.
Hello Talia! Thank you so much for sharing your story. Charles and I are praying for you and Josh, our "anniversary buddies!" God bless you!
ReplyDeleteTiffany Mullins, USACOM 2010
Talia, Praying for you, you are making all the right decisions. Trust in the miracles of God. Friend of Kelsey.
ReplyDeleteTalia, I'm so sorry that you are going through this and I pray that God will give you the strength to glorify Him through this trial. If you don't know about a non-profit called Now I Lay Me Down to Sleep I wanted to tell you about them. They are volunteer photographers that will come and do a photo session with you at the hospital when your sweet baby girl is born. Prayers for you and for your family!
ReplyDeletehttps://www.nowilaymedowntosleep.org/
I have been in your shoes and UAB MFM is wonderful. I will be praying for your family.
ReplyDeletePraying for your baby girl Dr. Gates!
ReplyDeleteOur story was very similar, although we didn't find out until about 35 weeks... Our son, Logan, was diagnosed with Thanatophoric Dwarfism also. If you ever want to talk, or text, or e-mail, please know I'm here.... We will be on our knees praying for you and your whole family. Also, I am a volunteer photographer for NILMDTS and would be happy to help you get in touch with a photographer in your area.
ReplyDelete~Brittney Fish
Praying for you and your family!! Love your favorite patient Ebony😘😘
ReplyDeletePraying for your sweet baby girl and your whole family. May God give you peace and understanding during this uncertain time and may he grant you a miracle.
ReplyDeleteThis post jimmy made me cry. I have always loved Psalm 139 but as we have walked this road with my sister these last 3.5 months, I have loved this scripture even more. And although we will never understand why things le this happen, we do know that these babies are fearfully and wonderfully made- perfect in God's eyes.
ReplyDelete