Sonogram scare
superhelga
Posts: 68 Member
We had our anatomic sonogram scan this week. I was so exited to another opportunity to see the little person hiding inside me, but it turned out to be a really scary experience. I just wanted to share, in case other people have similar experiences.
My husband could not take time off that day, so I went by myself. First it was really fun, confirming it was a girl and all. The technician was really thorough this time. I figured she was just less experienced. However, after 20 minutes of her checking the same over and over again, I got a little concerned. She reassured me that I was just early (19 weeks), so a lot of the organs she was looking at were not properly formed, and that the baby was in difficult positions. After 30 minutes I was really concerned, and asked her to tell me what she was finding. So she told me I had to speak to the doctor and left the room for half an hour.
When the doctor finally showed up I was sure something was very, very wrong. The doctor told me they found a water cyst on the child's brain, an indicator of a very serious chromosome abnormality. She recommended Id call my doctor and have have an amniotic fluid test performed. She also informed me that the test was risky with 5% fatality, and if they found the child actually have the disorder I can terminate the pregnancy up to 24 weeks. A child with the disorder will most likely not survive birth, or fist year.
I walked out of the office feeling the entire world had just crushed down on me. I tried to call my OB/GYN to get more clarity, but he was away on a 2 week vacation. Calling my husband I could not talk, just cry.
Hanging up on my spouse I felt so bad for not being informative, just an emotional mess, leaving him at total loss and sorrow too, so I sat down to write down all the facts in a message to him.
Blessed modern technology!! The more I googled the information the doctor had left me, the more the clouds brightened.
The statistics told me 2% of all fetuses have these cysts on their brain, and only 1% of these actually turn out having the disorder if they show no other symptoms (triosom 18 disorder) In other words: the chances for my child being totally normal is 99%. Thats pretty good odds!!
I don't understand why the hospital doctor recommend I take a test that decreases the child's chance to survive with 5%, when the actual threat of mortality is 1%.
I also am frustrated that she presented it to me in such a vague way. I know my emotions and anxiety at that point probably stopped me from processing the information objectively. All I could hear was worst case scenario, but if she had backed her facts up with actual numbers it would have been less daunting. Maybe is a very scary, big word when you are upset. 1% is way less scary and a whole lot smaller than maybe.
I don't know what I want with sharing this. I guess I just really needed to get it out, because it still worries me.
Suddenly my focus has changed from a kind of laid back attitude about the whole thing, to a strong urge for her to survive and be healthy.
I would love to hear if anybody have similar experiences.
And I guess i also somehow lost my faith in doctors, but at the same time found more confidence in myself and my own ability to gather information.
Also I would recommend everyone to have the doctor write down all the information he/she shares on a piece of paper for you. I insisted on having her write all the phrases down, and that totally saved me a lot of worry when I later could look it up again.
I hope I didn't scare anybody about having their sonogram now. Its easy to remember that its not about you seeing the baby, but spotting any issues and complications that might appear. And its the doctors job to let you know what they find. However. All they find are indicators, and in most cases these turn out to not be real problems.
Praying for everyone to have strong healthy babies!
My husband could not take time off that day, so I went by myself. First it was really fun, confirming it was a girl and all. The technician was really thorough this time. I figured she was just less experienced. However, after 20 minutes of her checking the same over and over again, I got a little concerned. She reassured me that I was just early (19 weeks), so a lot of the organs she was looking at were not properly formed, and that the baby was in difficult positions. After 30 minutes I was really concerned, and asked her to tell me what she was finding. So she told me I had to speak to the doctor and left the room for half an hour.
When the doctor finally showed up I was sure something was very, very wrong. The doctor told me they found a water cyst on the child's brain, an indicator of a very serious chromosome abnormality. She recommended Id call my doctor and have have an amniotic fluid test performed. She also informed me that the test was risky with 5% fatality, and if they found the child actually have the disorder I can terminate the pregnancy up to 24 weeks. A child with the disorder will most likely not survive birth, or fist year.
I walked out of the office feeling the entire world had just crushed down on me. I tried to call my OB/GYN to get more clarity, but he was away on a 2 week vacation. Calling my husband I could not talk, just cry.
Hanging up on my spouse I felt so bad for not being informative, just an emotional mess, leaving him at total loss and sorrow too, so I sat down to write down all the facts in a message to him.
Blessed modern technology!! The more I googled the information the doctor had left me, the more the clouds brightened.
The statistics told me 2% of all fetuses have these cysts on their brain, and only 1% of these actually turn out having the disorder if they show no other symptoms (triosom 18 disorder) In other words: the chances for my child being totally normal is 99%. Thats pretty good odds!!
I don't understand why the hospital doctor recommend I take a test that decreases the child's chance to survive with 5%, when the actual threat of mortality is 1%.
I also am frustrated that she presented it to me in such a vague way. I know my emotions and anxiety at that point probably stopped me from processing the information objectively. All I could hear was worst case scenario, but if she had backed her facts up with actual numbers it would have been less daunting. Maybe is a very scary, big word when you are upset. 1% is way less scary and a whole lot smaller than maybe.
I don't know what I want with sharing this. I guess I just really needed to get it out, because it still worries me.
Suddenly my focus has changed from a kind of laid back attitude about the whole thing, to a strong urge for her to survive and be healthy.
I would love to hear if anybody have similar experiences.
And I guess i also somehow lost my faith in doctors, but at the same time found more confidence in myself and my own ability to gather information.
Also I would recommend everyone to have the doctor write down all the information he/she shares on a piece of paper for you. I insisted on having her write all the phrases down, and that totally saved me a lot of worry when I later could look it up again.
I hope I didn't scare anybody about having their sonogram now. Its easy to remember that its not about you seeing the baby, but spotting any issues and complications that might appear. And its the doctors job to let you know what they find. However. All they find are indicators, and in most cases these turn out to not be real problems.
Praying for everyone to have strong healthy babies!
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With my first son and his 20 week ultrasound, they noted Renal Pelvis Dilatation and one other thing which now for the life of me I can not remember. The two of those combined put him at risk for Down's Syndrome. I remember the absolute stark fear. We had a follow-up ultrasound a few weeks later which ruled out the second thing they noted, but he still had Renal Pelvis Dilatation. Again they give you all the worse case scenerio which ended up causing a lot of extra worry as by the time he was born he had grown into his kidneys. That is seriously what it boiled down to. His kidneys were too big as a fetus.
Our second son, also had the Renal Pelvis Dilatation. This time we did not opt for the additional blood work testing as we had for our first son, becuase I was not concerned about it. Again Iver had outgrown it by the time he was born. After Iver was born and the doctor examined him she noted that he had a dimple at the very top of his butt crack. She stated that this could be a sign of some kind of spinal condition. And we had to go in for an ultrasound when he was a few weeks old to confirm he did not have this disease. I think it was spinal bufida (sp?). That may not be correct as I was not worried. I was holding a perfectly healthy baby and to this day as a 5 year old he still has a dimple at the top of his butt. It was just how God made him.
For our recent ultrasound, I was informed that my placenta was covering the cervix and I was having contractions the whole time. It was like pulling teeth to get any information from the reading doctor that the placenta was probably not that big of a deal as it will move as you get further in your pregancy and your uterus expands and it follows up the uterine wall with that expansion. I was not concerned, but was torked that he would not give me a straight answer until I got on his case. I had an OB appointment after the ultrasound and I discussed the placenta previa and contractions with my midwife. She was not concerned about the placenta as she said it will most likely move. Contractions ended up not being a concern as I haven't had any cramping or bleeding. I think the contractions were just from the ultrasound as the tech was really digging into my stomach and I know I was tightening my stomach muscles as it hurt. We have a follow-up ultrasound in 8 weeks to make sure the placenta has moved.
I truly believe that here in the United States that to protect their butts the doctors make it a thousand times worse, so that way when things end up being okay they were covered. If they did not tell you about the worse case scenerio and it happened, then they have to worry about malpractice suit. It is truly sad as it leaves so many parents-to-be in a lurch and in utter despair.
Know that you are not alone and I am hoping for a healthy and postive pregnancy the rest of the way for you!
*Edited as I can not spell this morning and probably missed a bunch of mistakes the second time as well.0 -
Oh my, that is horrible! I have my anatomy scan on Tuesday but I'll only be 18 weeks then... you haven't scared me but it's always good to be reminded that not every sonogram will be butterflies and rainbows. I'm glad things worked out for you @stephysd, and I hope you get answers soon, @superhelga.0
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I am so sorry you had such a scary experience! I have not had the issue you have, but I did have a bad 20 week scan with my first, my son. I too would be worried if they had taken so long and disappeared! I would have been a wreck. I am so sorry you had to go alone. I would have been crying to my husband on the phone too. I am honestly so surprised they got a doctor and told you ANYTHING. Mine wont. The 2 sonographers at our hospital have told me before that's not for me to decide, that's for the doctors to interpret, I just give them the slides. Um, ok. So my son had masses in his liver (though they couldn't tell exactly where they were at the first scan). They said all kinds of possibilities. I was told several things, none of which had a mortality rate for birth but that they would die in child hood with a poor quality of life. I was told if I wanted to terminate that I would need to drive 3 hours away to get it done as no one close does it at this point. I was horrified. They weren't even sure what was wrong but were offering to kill my baby that I had grown and loved for the last 4-5 months. What followed was a 5 week wait for a repeat scan. Then being send to a specialist, who did a scan. Gave no answers and repeated the scan in 6 weeks. Since things remained stable they felt confident that he would be ok, but still not sure what it was. This was followed by 12 months of follow up specialists once he was out. Thankfully they're somewhat sure it's just scar tissue from an infection I had that his liver filtered. He's a happy and healthy 2.5 year old boy. We were released from the specialist already. But I was a wreck for many months during the second half of my pregnancy. Then I got gestational diabetes, and was GBS +. None of the stuff wrong with me was that big but it all just rolled into a stressful time. I cried a lot, I worried, I curled up around my baby and would just talk to him and tell him he needed to be ok.
I hope for you that your doctors can offer you reassurance and hopefully followup scans may bring more before she's even born. I wish you a happy and healthy rest of your pregnancy. Stay strong. I'm glad google could reassure me because when I googled for myself it did not turn out as well. There's another site I like for support. babyandbump.com I've searched for their things before and women have posted a lot about different issues. Maybe you can find more support from moms that are going through something more similar there too. Best of Luck.0 -
I can personally understand exactly how you are feeling. I am 2 weeks out from my ultrasound where I was told that my child has a very serious heart defect - most likely HLHS (Hypoplastic Left Heart Syndrome). This is 100% fatal if not immediately treated with open heart surgery. Actually, the baby will need a series of 3 open heart surgeries within the first 3 years of life.
I am in total depression right now. I am having a hard time doing even daily tasks. I am a complete mess and I feel like nobody can understand what I am going through. Not even my husband gets it. I am hoping I can pull myself out of this and be strong for this baby and my other children.0 -
I can personally understand exactly how you are feeling. I am 2 weeks out from my ultrasound where I was told that my child has a very serious heart defect - most likely HLHS (Hypoplastic Left Heart Syndrome). This is 100% fatal if not immediately treated with open heart surgery. Actually, the baby will need a series of 3 open heart surgeries within the first 3 years of life.
I am in total depression right now. I am having a hard time doing even daily tasks. I am a complete mess and I feel like nobody can understand what I am going through. Not even my husband gets it. I am hoping I can pull myself out of this and be strong for this baby and my other children.
I'm so sorry to hear this and my thoughts and prayers are with you and your baby. Is there a counselor at the hospital that you can speak to regarding how you feel? It might help. I know when I did my genetic screenings they paired me up with a counselor just in case I had any questions or concerns.
Have faith that everything will be okay...praying for you. :flowerforyou:0 -
Hi guys. Ive been so busy and absent for a while. Thank you for your replies. Reading your stories, I feel so blessed everything seems to be going forward well.
Mommyis fit: my heart goes out to you and your baby!! I don't know if you are going to read this, but you two are now in my toughs and prayers. I cant imagine how tough this must be for you. I wanted to send you a message, but am afraid to step on your toes. Im sending all my love and some more your way!!!
Spunkychelsea, What you went trough with your son sounds just unbelievable. It must have been terrifying. I'm so happy everything went well in the end!! Hoping this one is moving on just perfectly!0 -
Mommyisfit - I completely missed your reply. I hope you and your baby are ok. I would be severely depressed too. I can't imagine what you're going through. I hope by now you've received more - and better information.
superhelga - thank you, luckily he's doing great, as are the two girls (the 1 y/o and the one due in May). I have been very blessed to only have his scare so far and no other complications.0 -
So sad and scary reading all of your stories. I went into my ultrasound already knowing it was a boy (I just knew) and a little excited to see him but mostly anxious to see and hear that he was perfectly okay. I was super happy when I was told he was big and healthy and perfect. I would have had a hard time taking in anything less.
I did not have any scare at my ultrasound, only scare I had was the month before. Went in for my appointment, doctor pulls put the Doppler and tries finding baby's heartbeat - nothong. He leaves and comes back with a new Doppler, brand new still in box. He sets it up and proceeds to try to find the heartbeat - nothing. The look of fear was written all over him and I was trying so hard not to cry. He left, saying he was going to see about getting me into an ultrasound. He rushed back and took me into the ultrasound and did the ultrasound himself. There was baby's heart - beating at a perfect rate and nothing seemed wrong. Doctor explained to me something about having a thick placenta and it creating a sound barrier.
This was my only 'scare' and it was bad enough. I am sorry everyone else was struck with the fear they were
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