18 week ultrasound scared me--20 week ultrasound now indicates hydrocephalus

My husband and I came from our 18 week ultrasound yesterday and the baby was curled up pretty tight (though we managed to confirm it is a boy!) and the technician could not get a good read on the head. As a result, they want us to have an additional ultrasound to see if the baby has Down Syndrome. They mentioned needing an amnio to confirm that definitely and that we should wait until we are in week 20 to have the 2nd ultrasound. Our doctor was reassuring and said we are borderline with this for now and that the odds are somewhere between 1-100 and 1-10 and that it may be too soon to tell and they want to make sure. We have no history of this in either of our families and are both 29. We left the office scared, confused and full of worry. We are trying to be positive (worse case it means that we have 90% chance of everything being fine) but it is hard. We will not terminate the pregnancy no matter what, but I am worried about having a needless amnio and putting the baby in danger. Please let me know your experiences on this as it would be able to provide some comfort right now. I think my husband and I may be getting ahead of ourselves with worry when the chances are small and the data inconclusive, but any hope would be greatly appreciated right now.

I know it's hard to not worry but don't! They should wait until after the 20 week u/s to do the amnio, they might not need to after the 2nd u/s.

Our technician couldn't see our baby's spine and we had to wait two weeks to come back (there's a reason to wait 2 weeks, can't remember why) and I was worried for nothing, they just needed a better view to see what they needed.

One of my favorite dumb movie quotes is "worrying is like a rocking chair, it gives you something to do but doesn't get you anywhere". Relax mama!

Brook,

I'm with TJ on this one. Neither of my two children have any major medical problems, but I did have a scare with my daughter.

She is 17 months old and had been born with VSD (hole in the lower part of her heart). By around 4 months old the murmur had gone away. We thought we were free and clear. At her 15 month check up there was another heart murmur heard. Terrified me no end, I though the VSD was back. We had to wait 6 or 7 weeks to get into the Cardio at Children's hospital to have an Echo done to see what was going on. Needless to say in that time I fretted myself away only to find out that she does not have VSD, but she does have a totally non-life threatening abnormal connection between two blood vessels leaving her heart called PDA. It's Latin and I'm not getting up to get the little half sheet they gave me. She'll go back next year to see if it's still there or not. If it is there would be a small, minor surgery to fix the abnormality.

Take a deep breath, let it out and relax. Repeat as often as needed until you are relaxed.

Melissa

Take a deep breathe. The chances are very slim that there is something wrong. The doctor and tech are just being cautious, which for us moms isn't very comforting. We went through numerous ultrasounds with our second baby, because he was small, didn't move much, I had bleeding, etc. And of course the doctor was more than ready to give me a list of possible issues that might arise when he was born. We had an ultrasound a few weeks before he was born and the tech just stared at our folder. She looked at us and said you know most of this is normal and the baby could just be petite (I am only 5'1), the bleeding is normal as it wasn't heavy, and the not moving just means he is lazy as all the vitals were good. Have faith that whatever happens you are strong enough to make it work. You are a mom and we all have that knack. If you feel that a test is unnecessary then don't do it, follow your gut feeling.

Put the worry aside as much as you can, Brook. All the worry in the world won't change the outcome for worse or for better, except that YOU will have a lot tougher time while you're worrying.

In my experience, nothing ever goes as you worry or hope that it will, anyway. It will be harder, easier, harder, funnier, harder, more perplexing, harder, more rewarding, (and did I mention harder?), and, well, it will just be LIFE! It will be what it will be, and somewhere in our hearts we have already agreed to that when we chose to become pregnant. You've decided you'll have this child no matter what, so smile, pray, trust, and move forward.

Friends of ours have a daughter who is a dwarf. There was initial shock and despair (it wasn't apparent until after birth), and the adorable child encountered her own set of medical and physical problems as she grew into toddlerhood. The parents coped with each challenge as it arose, and there were always solutions of one sort or another. I'm happy (and blessed!) to see how equally delighted and loving the parents are with both their daughters, how much they have learned and grown, how they have become enthusiastic participants in a whole new "world" of little people that they didn't know existed.

Blessings! You WILL handle this, even in the unlikely event you have a Down child.

I had a Amnio when I was pregnant with my first son and I was ONLY 16! They were worried about Down Syndrome too. Everything was FINE!!! If you do have to get one it's really no big deal. There are some risks but all in all actually a pretty safe procedure! I was sooo freaked out. I thought forsure something was wrong but My lil man was GREAT!

Hope this helps!

~Jenn~

Brook, I have to tell you that at EVERY SINGLE ultrasound I had with my oldest the doggone ultrasound tech found something that "was an indication of Down Syndrome." I'm not exaggerating. The (large) size of my son's head. His large feet.

With us, though, my sister-in-law had had a Down Syndrome baby about four years earlier. (She was 47, so was definitely in the higher risk category for this condition - but every ultrasound SHE had was "fine" and her baby shocked all of them.)

Anyway, I carry a genetic disorder and had done prenatal genetic testing through a CVS procedure when I was eleven weeks pregnant. Since the lab already had the sample, I had authorized the test for Down Syndrome as well. My son came back negative for everything and was just fine. BUT, they would have driven me absolutely bonkers with the "this is a sign of Down Syndrome" and "that is a sign of Down Syndrome."

If I had not already had the CVS, I would have had the amnio to rule out Down Syndrome - even though we were also under 35 (which is when the chance of Down Syndrome begin to increase). An amnio is a much lower risk procedure than a CVS - though it doesn't feel good for mom! I'm the type of person who does not like surprises and who does not like worrying over what ifs. You are extremely low risk for having a Down Syndrome baby, but what would it do for your peace of mind to know one way or the other? With my personality, I needed to know. (I'm a "hope for the best, but plan for the worst" kind of gal.) Some people (like my mother, for example) are eternal optimists and expect the best unless or until something happens to change that. So the decision for you really depends on what type of person you are.

But, I have to say that my DS niece is a happy, healthy, high-functioning little girl. She was a little slower to walk and talk but she's doing very well and her mom has a lot of assistance from state programs. My niece is expected to live a very full life - so, no matter what, I'm sure that everything will work out well for you.

I do feel for your worry.

It won't change anything about what you do, so, why go through it?

Good friends in my life went through a scare about their baby. They were told that the baby may have, simply, water on the brain. They went through weeks of worry, then went to a speciaist to be told that everything was normal and fine.

When the baby was born, she was actually born with what they originally suspected, along with other things.

Please realize that this is not meant to scare you futher, just to show, they can be so very wrong. And it can be so very devistating. Unless it is a defining, potentially deadly result, why do you have to go through the tests?

On the other hand, you will now worry no matter what. The test may aleviate that, and...there are some that believe that you take all you can get. The are just challenges, not definitions.

I know so little, but, I really thought there were age and/or history components that must be present to be in danger of this.

Good luck and best wishes to the 3 of you.

My twins both had indicators of down syndrome - and of course I worried and worried, but they were fine! I never did the amnio. Like you, I would not have terminated so I just resolved in my heart that if they have it then they have it and if not then they don't! It became reasonably clear in later ultrasounds that they did not and I just decided not to worry about it anymore. I hope your baby is just fine, but if not then everything will still be ok. sad at first but ok. I have one child with a disability and I felt sad for a while but it really opened my heart to loving disabled children and I have come to feel honored that I was entrusted with caring for one of these special ones ... Debbie

Hi Brook
Sorry that you got that news. I just had my son 7weeks ago and I was 21 weeks when I had a ultrasound and they said the nuchal fold was abnormal. They wanted me to do an amino. I went to genetic counseling first and they told us we had a 1 in 27 chance. I decided not to have the amino. If your not going to terminate I don't see why you should have it. Turns out our son is not Down's. In fact, I found out that lots of people have had been told this and it turns out fine. One even that was told a 1 in 5 chance and her son was perfectly normal. So with all this added technology and information it's still just a crap shoot. I wouldn't worry too much and I wouldn't go through the amino if the answer is not going to change whether you carry the child or not. Good luck and stop worrying.

I had my first pregnancy at 43 (unplanned). I had a different test due to my advanced age. Everything was fine. If you wouldn't terminate the pregnancy no matter what, then it seems that the amnio isn't really necessary. The best thing you can do for your child is keep your stress level low so that you aren't pumping it full of stress hormones. That can also affect the way it develops. (I know, one more thing to stress out about). Just think about how much you love it, love your husband, love your life.
My son is now getting ready to start 2nd grade. He is a great kid. I hope this is helpful.

When I was pregnant with my 4th child, they told me the ultrasound showed Down Syndrome because his long bones were much too short. We were stressed and worried for 3 weeks.
I was sent to the San Francisco Medical Center for the amnio. They first took another ultrasound and then laughed. I was told that he did have short long bones - but only if his parents had been over 6ft. tall. Since we are both shorter people, his bones were fine. The amnio was cancelled and we had a beautiful son with no problems. He is now 18yrs. and still shorter than I am, but a very healthy, active young man.
Your little one will hopefully stretch out enough let them get better pictures next time so they can know he is fine.
I know you can't help but worry, but remember, they were not certain there is a problem. It's just a precautionary test. Hopefully you won't need it.
Jo

Of course you are worried--- ( and what expectant Mom/Dad doesn't????) These tests are important- and OFTEN create needless anxiety- exactly as you describe. Here's my hand across the '''printed word''' -- we are with you - and I can't urge you too strongly to be really selfish and take care of all 3 of you the best you can-- I'll be ''listening'' for your reports--

Blessings,
Old Mom
aka- Judy

I'm sorry your going through this. I would be terrified, but at the thought of something being wrong with the baby, the amnio is no big deal really, they give you an ultrasound at the same time to make sure the needle is going where it should and doesn't disturb the baby in any way. they numb the area. it's really not that bad it was done before i knew it and couldn't even tell where they went in.you'll be fine I promise. I'll pray for a good outcome on the test.. god bless.. dawn

Hi Brook,
I just wanted to agree with some of the other ladies and say that it is your right to refuse the tests. If the results of the test are not going to affect your actions during pregnancy or anything during delivery, then why worry yourself til then. All that will do is be harmful to you and the baby. It is scientifically proven that we have different horomones running around in our bodies when feeling different emotions and it can affect our baby - so I know it's only natural to be worried, but try to put that worry out of your head and focus on enjoying your pregnancy and preparing for your beautiful baby to arrive!
When I was pregnant with my son one of my three midwives would measure my belly and decided that I had a big baby, she estimated by her measurements it was 14 lbs +. She brought out all these scary waivers since I wanted a natural delivery, saying that if my baby lost use of his arms because I was demanding a natural birth then they were released of all liability. I had a healthy 7 lb baby naturally with no problems - I wanted to ask her "where's the other half of my baby?"
Doctors have to notify you of any possible things that may be going wrong because if they don't you can sue them. So, sometimes they go overboard (to cover their butts) - and thank goodness most of the time they are wrong! :-)

So, you and your husband have to decide whether or not you want to know now for sure or not. And if you don't follow through with the tests, try to stay as positive as possible!
Good luck!
Michelle

Do some research on amnios. They have a high rate of terminating the pregnancy by rupturing the sack. If your baby has Down's, it has Down's whether you have a test or not. I have seen so many women go through hell with tests that give false positive results. GIve it to the Lord and enjoy your pregnancy, your baby and birth and love that little life with all you have.

Hello Brook,

If don't plan on terminating the pregnancy, an amino is NOT necessary and in my opinion an unnecessary risk.

I did not have an amino with my pregnancy - we would not terminate as well. The only reason for us to have an amnio that we could think of(I was told all that you were told too) was to educate myself about raising a Down baby. But I was prepared to educate myself when we crossed that bridge.

We did give birth to a very healthy baby without downs, however she spent 6 weeks in the hospital as a "Feeder and Grower". While in the hospital, we were next to a VERY sick baby who was born 12 weeks early as a direct result of a bad amnio infection. The mom was sick that she went ahead and had an amnio when she had zero plans to terminate even if she had downs.

There are 1000's of amnio done everyday that are successful and give parents a great peace of mind that all is well. But if you don't plan on terminating even with a downs baby, then the amnio is an unneccessary risk that you don't have to take even if your doctor suggest it. Most woman want the amnio, so I think doctors are taken aback when a woman says no to the test, I know mine was and asked me multiple times if we planned on doing an amnio.

There are risks with a lot of things in life....this little "test" is just the beginning of the worrying things that your "little one" will throw at you. Parenting are little hills of challenges to help to make you stronger.

Wishing you lots of peaceful times during your pregnancy.

Positively,
Margaret

Hi Brook.....I'm a 41 yr old SAHM with a 3 yr old and a 6 month old. Both of my pregnancies were considered high risk because of my age. We took every test offered, mainly so that we would be prepared if the results were not so good. With the technology today the risks are very slim. I would certainly do whatever you guys think is best and dont be swayed by anyone on the decision you make.

I would take the second ultrasound before the amnio since less risk is involved.
Two weeks can seem like an eternity of waiting, but it is two weeks until the normal time for ultrasound. Then they can have a comparison and hopefully the baby will be more cooperative.
Don't freak yourself out about the possibilities yet. Just read a few basics, if you need to prepare yourself slightly or want to ask good questions at your next appointment.

Brook, I am so sorry that you have had this worry put on you. I will tell you I had a very similar experince with my son who is now 3.5 and full of life! My husband and I made the descsion that since there was no way we would terminate we would not go through the amnio, and just trust that we would not be given anything more than we could handle. in the end our son was born healthy and happy, and I could not be happier with the choices we made during the pregnancy.

My thoughts and prayers are with you, and I know that you and your husband will do what is right for you.

Good luck!
Courtney