And the Bubble Bursts
May 14, 2011This is not the post I had ever imagined writing. It is not a post I want to write, but I have known for the past several days that I would have to write it. I can’t hide forever. It is a part of my life right now that I would probably rather close off, but as I have always thought with weight loss that if hearing this can help someone else, then it makes it worth writing it. Right now I feel alone. I have been searching for other experiences, other blogs, for hope, for the things to say… so far I’ve come up empty. I want to document this anyways… as a coping mechanism, as something tangible that I can have for later. So here goes…
Thursday morning we had our 20 week ultrasound. The baby is a girl, so my premonitions were right. But there are complications with the baby. The ultrasound tech was very happy-go-lucky. Never in the 30 minutes she was scanning me did I feel something was wrong. The baby was moving a ton, we joked about it. At the very end she said, “Let me make a deal with you guys, I’m going to get a doctor to check something out, and after that we will try to get some better pictures, ok?” She left the room. I looked at my husband and remember saying, “This cannot be good, but even as I said it, I did not, nor could not understand the enormity of what was about to come our way. My very own doctor entered the room, and said something about some excess fluid around the heart and lungs, and after that we were given an appointment 2 hours later with a maternal-fetal medicine specialist. We left in a daze, not understanding what was to come, and later that day met with a specialist and a genetic counselor.
There are many unknowns at this point, but I will tell you what I know. These are the facts.
The baby has a cystic hygroma on its neck - this is a large fluid filled sac - kind of like a big tumor. She also has fluid around the heart/lungs - and while the heart structures appear normal, the fluid is likely evidence of a heart defect we are not seeing yet. The baby is not completely growing on track - the arms/legs are shorter than they should be... Yet are normal. The head/belly are measuring normal. The baby’s weight is normal for 19 weeks. The baby's face, spine, and brain structures are all normal. So much wrong, yet so much perfectly formed.
The specialist feels it might be something called Turner syndrome. Turner Syndrome is a chromosomal abnormality - in basic terms a girl is an XX and Turner syndrome girls are missing part of all of the second X chromosome. Normal babies have 46 chromosomes, Turner syndrome babies are 45 chromosomes. It is present from conception. It is not something you can "fix" by resting more or doing something different. 90%+ of babies with Turner syndrome die in a miscarriage or stillbirth. The majority of those are first trimester miscarriages, so it is uncommon to see Turner syndrome beyond the first trimester, as in my case, and even more uncommon for a Turner syndrome baby to make it to birth alive.
We are told that the condition of the hygroma and fluid in the heart/lungs will either get worse, stay the same, or get better - not really very helpful. Babies with Turner syndrome have a very high incidence of heart defects many of which are unfortunately fatal. The Turner syndrome itself cannot and will not go away. Also, to make things even more confusing, the baby may not have Turner Syndrome and could instead have a rare unknown genetic defect, been exposed to an infection, or even have Down Syndrome. Although the doctor feels those are unlikely scenarios. For now though, given all the evidence, the doctor strongly feels this is classic Turner syndrome, and it is what we were mainly counseled on. We cannot know definitively if this is Turner syndrome unless we do an amniocentesis, which we have decided against for now. It doesn't change the outcome anyways.
We have been told there is about a 2-7% chance our baby will be born alive. Unfortunately the baby having these issues puts me at even a higher risk of preeclampsia and HELLP syndrome to reoccur. So, the doctor’s are definitely having to manage my health in all of this as well. I will be at a doctor every 1-2 weeks for the immediate future. Once the baby is past 24 weeks - about 4-½ weeks away, they could deliver her, and intervene more easily for her on the outside, but a 24 week baby - even one without outstanding health problems, still doesn’t have a great chance of making it.
If the baby does have Turner syndrome and does survive the pregnancy without severe heart defects, she can have a very good life... she could never have children of her own, but would have a near normal IQ, with little if any mental handicaps, and not really any outside longstanding cosmetic symptoms, other than she'd probably be quite short.
We have a follow-up ultrasound in 3 weeks at the specialist to see what is happening (worse better or the same), and 5 days after that the baby will have an echocardiogram - which is a special heart ultrasound done by a pediatric cardiologist.
How am I feeling? I am going to be completely honest here. I am extremely bitter, angry, and terrified. I am having trouble having any faith or trust. After miscarriage, the difficult birth of my son, and now this I feel that somewhere I must have done something horrible in my life to deserve all of the sadness that has happened to me and my family. I do not deserve this as a reward for my efforts. This little girl does not deserve this. I feel like the weight I lost, the huge life changes I made were all for crap. I feel like I'm in a haze walking outside my body watching a nightmare unfold. Given my history and our experience and age this is our last chance to add to our family, and the sadness I feel is gut wrenching at best. And yet, in the midst all of the hurt, pain, crying, I have small moments of peace, relief, and clarity - small ones - but I suppose that is all I can hope for. It doesn't help when I feel the baby kicking and know she is alive and trying, but doesn't know the reality and gravity of her situation. My bubble is certainly burst!
I know that miracles do happen, but I also know that this world is full of sin and evil. I believe in the power of God to heal, but I have not been able to pray for myself or my unborn child yet, as I have no words to say. I am hoping for a miracle, yet I am expecting the worst. I am a pessimist, I always have been. I know many other people are interceding on our behalf already, and I cannot thank them enough. I would covet and appreciate any prayers you can send our way. I would appreciate you spreading our little girls story to others that might pray for her as well.
I cannot guarantee how I will handle posting from here on out. I certainly don’t feel like posting about weight loss or health, as it all seems so unimportant and trivial at this point. At the same time I’m not sure how I feel about posting about this pregnancy ongoing, but as I stated at the beginning, I also wish that I was able to find a blog out there sharing someone else’s experiences with this, and so far have come up empty.
If you have them, hug your kids tonight. I know I have been hugging my little boy constantly. I knew already he was a miracle given his start in life, but I only feel it even more strongly now. Over the past 4 years of my life I've unfortunately come to realize what a miracle having a healthy baby actually is. Yes, it seems like people do it every day, but so far in my life that has not been my personal experience.
Bubble. Officially. Burst.
37 comments
I am so sorry about this.
ReplyDeleteSuch sad news. You are in my thoughts at this difficult time.
ReplyDeleteYour in my prayers!!
ReplyDeleteI pray that your future u/s gives you better news.
ReplyDeleteI'm praying. My heart is hurting for you.
ReplyDeleteI am so sorry you are going through this. You will be in my thoughts and prayers.
ReplyDeleteI have tears in my eyes right now and my heart is hurting for you. There are truly no words to say to give you comfort right now, except to say that I'm praying for you and will continue to do so. I can only imagine how painful this must be. It took my husband and I 11 years to conceive my son. I went through many angry moments with God. I've learned that even if we can't muster up words to talk to God, He already knows our thoughts, knows our hearts, knows our needs. God is definitely still in the business of doing miracles (my surprise son is proof of that). I'm praying He will intervene for you as well. Sending the biggest hug to you right now and praying for you, your family, and your little girl. For guidance, for strength, for clarity, and for things that only God knows you need.
ReplyDeleteKeeping you and your baby in my thoughts and prayers!!!!
ReplyDeleteI'm so, so sorry. You don't deserve this at all.
ReplyDelete(((Sarah))) I'm so sorry! I want to encourage you.... you say you haven't prayed for you or the baby girl you carry, yet. The Bible says, in Romans 8:26, "In the same way the Spirit also helps our weakness; for we do not know how to pray as we should, but the Spirit Himself intercedes for us with groanings to deep for words." I will pray for you and your little girl.
ReplyDelete((Sarah))
ReplyDeleteOh, I'm so sorry to hear this. I know that this is horrible news to hear and it is probably even harder to wait until you know more. You are in my prayers....
ReplyDeleteSo sad to hear about this news! I have a co-worker that has a high needs baby and she always talks about how God chose her for this child. There is a plan in this sad, sad situation. I will be praying for you and your little girl.
ReplyDeletehttp://www.everythingandnothingfromessex.blogspot.com/
ReplyDeleteI personally can't relate to being pregnant nor to finding out what you just did...but after reading your post, I just wanted to share this blog with you. It's written by a friend of mine. I think you'll be encouraged by her story.
I am so sorry to hear your sad news. Please know that you are in my prayers.
ReplyDeleteSarah -- I checked your site furiously for updates on Friday waiting to find out about your little one, and when I didn't see a cheerful announcement I was concerned but blamed it all on the problems Blogger was experiencing on Friday. A part of me had a bad feeling though, and so you were in my thoughts all weekend, and you will continue to be. I don't know that there is anything I can say to ease the pain right now, but know that you are on my mind and in my heart.
ReplyDeleteI am so sorry to hear about this. Miracles do happen.
ReplyDeleteSarah,
ReplyDelete(((((HUGS))))) I am so sorry to hear this. I will continue to keep you & your baby girl in my thoughts & prayers. I want to say that one of my friends from college was born with this syndrome, and while she is short (around 5'), you wouldn't know anything was different by looking at her. I pray that your daughter is one of the lucky ones & is able to live a normal life.
I'm so sorry, Sarah. I will be praying for you and baby girl every time I think of you, which is often. I wish there was some comfort beyond that I could offer.
ReplyDeleteI don't want to be morbid and suggest you'll need to deal with your daughter's death at birth, but my sister in law unexpectedly lost her baby due to an extremely rare case of newborn Leukemia (contracted in the first trimester) in January this year. She has a blog which she has used for therapy that you may want to check out if the time comes that you lose your baby girl. http://www.paigesparadise.blogspot.com/ God Bless You!!!
ReplyDeleteOh my Friend! My heart is broken for you, for you family and your precious little one. Know I am praying for you all. May the Lord be with you and bring you comfort, hope and joy. Sending much love and hugs your way!
ReplyDeleteSarah... I am thinking of you and your unborn baby girl!! As I read this (with tear streaming down my face), my own daughters asked what was wrong. We talked through how God has plans for us all and comforts us in happiness and hope and never give us more than we can handle. We pray so much for a healthy and happy delivery of that sweet baby girl!
ReplyDeleteYou are strong Sarah. I hope you will gain strength and comfort knowing that so many are praying for you, your baby girl, and your family.
ReplyDeleteI'm so sorry you're going through this. Although I haven't started a family yet, my heart brakes reading about this situation. You are in my thoughts and prayers, Sarah!
ReplyDeleteyou do not know me, but Jane M sent me this link. she knows my story and we have some similar experiences. I lost an infant son at 5 weeks due to lung abnormalities. He was born without arms and legs...guess everyone concentrated on the outside stuff. There was no answer-just to let him go to heaven. Then after genetic testing and autopsy...we were told it was an analomy. less than 1 1/2 years later i was faced with an ultrasound of my beautiful girl without legs. She was born 6 weeks early and lived only two days. I remember living those days when she was growing inside me...hoping it was all a huge mistake and that she would be perfect by some miracle. That did not happen, but the miracle of her brief time on this earth and her home in heaven did happen. I did not get to this point of acceptance easily. It took a lot of shouting and crying and grief. We do not know the plan God has for us....i pray that your sweet girl will be able to know your love. I pray for your miracle...in whatever form that takes. feel free to contact me. you are not alone or forgotten. julie
ReplyDeleteHi! This is actually the first blog post I've read of yours & am really sorry to hear your news. I'm going in for my ultrasound on 5/31 & have been worried about a similar outcome. I've given it up to God, which has helped my worry subside. A blog I've been reading which is incredibly inspirational is http://www.kellehampton.com. She was blessed with her second dauther who just happens to have been born with down's syndrome and her post about the birth & aftermath are very transparent & honest. Although your life seems rather dark at the moment, I'm praying for hope, wisdom, and peace for both you & your baby girl. God Bless! ~Gina
ReplyDeleteJust finding this post as I haven't been by the computer in awhile. I haven't posted many things down that I have experienced with my pregnancies, etc. and now with my son who has cp. I don't want to write publically about this but would love to correspond if you would like at peeweepinson@yahoo.com. I don't know anything about Turner Syndrome but I know a thing or two about what you are going through. Before when I was reading your posts about "that feeling" you were having that something wasn't right, I talked positive with you but inside alarms were ringing, I know "that feeling" and I have learned in life to trust that feeling, but I was hoping this time "that feeling" was wrong. You and your family are in my prayers, if you would like to talk about my experiences feel free to write me. I work for the DA in my state and I will be off and on the puter this week. I understand you anger and bitterness and I am so sorry. Praying for your peace of mind and hopefully some answers soon.
ReplyDeleteHoney try this, it has helped me in the past:
ReplyDeletehttp://www.caringbridge.org/
Sarah, I'm so sorry you're hurting. I hope that in the days to come you can find some peace.
ReplyDeleteI am devastated for you. Life is most certainly not fair! Keeping you and your family - including your sweet baby girl - in my thoughts and prayers.
ReplyDeleteHow awful. I'm so sorry. I'll say a prayer for your family.
ReplyDeleteStay strong.
Sarah-What a devastation! I will pray for you, your family and that precious baby girl. Psalm 139 came to mind when I read your post. It is a Psalm that comforts me that God is there and knew everything before it happened. It just makes me sit back and think of what an awesome God we have and that He is there when we are in the deepest turmoil or when we are on the highest mountain. Verse 10 always stands out for me, "Even there shall thy hand lead me, and thy right hand shall hold me." He is there, Sarah even when you feel you can't pray, He knows your needs.
ReplyDeletePraying for you,
Melanie
Hi Sarah - My name is Heidi. I was guided to your blog from a mutual friend who saw this post. My baby was dealt the same cards two and a half years ago. My daughter, Ellery had a cystic hygroma and fluid surrounding her heart and lungs (which developed into more fluid - a diagnosis called Hydrops). We were sent on the same course as you, a maternal fetal specialist with amnio and turner syndrome testing (which came back negative). While the chances are low (Ellery had 5% to survive), it can be a good outcome. I'll email you with more information and my email if you want to talk more. Thinking of you and praying for good news!
ReplyDeleteHeidi Case - Ellery's mom
Ellery's CaringBridge: http://www.caringbridge.org/visit/ellerycase
Oh Sarah, I'm sorry to read this hard news. my heart is heavy with you.
ReplyDeleteI'll be praying for you and your daughter. And even if you can't pray, God hears your heart, now more than ever.
Big Hugs coming your way...
Hi, Sarah,
ReplyDeleteI want to encourage you by telling you that I have a 35-year-old daughter who is Turners (Full Turners, that is--the worst prognosis), and she is a tremendous blessing to everyone every day. She is a wonderful prayer warrior, has a university degree from a high-academic private university, and has done several years of missionary work overseas. Her heart problem has improved with age, and she is in excellent health. I will admit the first day after her diagnosis was a rough day for me--battling fears etc. But, looking back I can praise God for everything about her life.
Oh my dear Sarah, as I said in the previous post, you, your little girl, and family are in my thoughts and prayers. Much strength to you through this time. <3
ReplyDeleteHi Sarah,
ReplyDeleteI found your your blog via Baby Center, as I was trying to find a good outcome of a baby with a large CH. I'm 16 weeks with a TS baby with a very large CH (5.6 cm), pleural effusion, and skin edema. I know it makes much more sense at this point for me to just prepare for loss, but I'm still desperate for some reason to hope. Your story gives me hope! Can you tell me-- and I know this is ancient history! -- how big did your Lily's CH get?
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