Genetics Counselling Feedback
Hi Everyone,
First of all, thank you so much to the many people *****sponded to my post, sent me PMs, sent good vibes my way on Wednesday. It was so nice to have your experience and your warmth as my husband and I went through this trying week.
Here is what has happened. On Monday, my OB gave me the results of our IPS (Quad Screening) test. They were less than encouraging and presented in a way that left me very unhappy. Because I will be 38.2 years old at the time of delivery, my risk for carrying a child with Downs is 1:160. Both my husband and I knew that going in to the baby-making process. We had also decided very early on tht we are both prepared to and would always welcome a child with special needs into our lives. When I met with my doctor, she informed me that my tests showed the increased risk of 1:35. I was thrown for a loop. I was to call our local children's hosipal (the amazing CHEO) and book an appointment for genetics counselling immediately. This also shocked me and kicked me into the reality of becoming a worried mother. I was amazed at how quickly we got an appointment - I'm in Canada, so sometimes meeting with specialists takes a little while, it is only when things are really serious that you jump the queue and are attended to immediately. Yikes.
My husband and I went to the Genetics Counsellor on Wednesday afternoon and from the moment we enter her office, we felt at ease and as though things were goign to be ok. First of all, she put 1:35 into perspective for us. Between us we have 4 University degrees and we didn't even think to do the math. 1:35 is still only about 3% and the risk in the general population for birth defects is 3%. We learned that out of the four markers, only two were off the normal range - one was really off (my HCG levels are really high, hence my wicked bad morning sickness) and one, my AFP (?) was a little low. We talked about amnio and learned that at our hospital, the local risk for miscarriage is 1:400 - which is better than the North American average of 1:200. We are not going the amnio route, but that number was nice to hear too. I do respect the rights of others and know that in some cases it is very necessary, but right now, for us, it is not what we want or feel we need.
We wanted to hear the advantages of getting the 100% reality that amnio would provide. She kept re-iterating that our child is more than likely just fine and developing normally and that amnio would show just that. Also, other than knowing that yes or know the child has Downs, there is no way to assertain the extent of the Downs - other than a heart defect that would only be seen in an US. So just as no one ever knows if their child is smart, blind, has autism, is good at sports, or has a learning disability, there is no real preparing for what is to come. We asked about waiting lists for babies with Downs in our area and whether knowing a few months ahead of time would help to get special services for our child or not, and she said no. That if the child is born with a special need, we would immediately be hooked up with services.
So:
1. Because the risk is in essence only 3% of Downs and because we would love and cherish such a baby and;
2. Because amnio still carries a slight risk of miscarriage and;
3. Because we are not missing anything for our kid in terms of service and program waiting lists and:
4. Because you never know what kind of journey you are going to be on with your child until that child enters your life out of the womb we are simply going to let go and enjoy the pregnancy and pray that our child is happy and healthy.
If I am ever pregnant again, I am not doing the screening tests. Too much stress for this chickie. On Sunday morning my husband, another couple, and I are heading to the Dominican Republic for a stree and worry free vacation. It is just what we need - some sun, some ocean, and some time to just relax. We are hoping that this is a turning point for us, the first trimester is a nightmare with the morning sickness and migraines, the last week has been torture, so now we are ready for baby bumps and big boobs!
Thank you again for all of your support! Happy weekend!
Jenn
PS I am giving up worrying for Lent.
First of all, thank you so much to the many people *****sponded to my post, sent me PMs, sent good vibes my way on Wednesday. It was so nice to have your experience and your warmth as my husband and I went through this trying week.
Here is what has happened. On Monday, my OB gave me the results of our IPS (Quad Screening) test. They were less than encouraging and presented in a way that left me very unhappy. Because I will be 38.2 years old at the time of delivery, my risk for carrying a child with Downs is 1:160. Both my husband and I knew that going in to the baby-making process. We had also decided very early on tht we are both prepared to and would always welcome a child with special needs into our lives. When I met with my doctor, she informed me that my tests showed the increased risk of 1:35. I was thrown for a loop. I was to call our local children's hosipal (the amazing CHEO) and book an appointment for genetics counselling immediately. This also shocked me and kicked me into the reality of becoming a worried mother. I was amazed at how quickly we got an appointment - I'm in Canada, so sometimes meeting with specialists takes a little while, it is only when things are really serious that you jump the queue and are attended to immediately. Yikes.
My husband and I went to the Genetics Counsellor on Wednesday afternoon and from the moment we enter her office, we felt at ease and as though things were goign to be ok. First of all, she put 1:35 into perspective for us. Between us we have 4 University degrees and we didn't even think to do the math. 1:35 is still only about 3% and the risk in the general population for birth defects is 3%. We learned that out of the four markers, only two were off the normal range - one was really off (my HCG levels are really high, hence my wicked bad morning sickness) and one, my AFP (?) was a little low. We talked about amnio and learned that at our hospital, the local risk for miscarriage is 1:400 - which is better than the North American average of 1:200. We are not going the amnio route, but that number was nice to hear too. I do respect the rights of others and know that in some cases it is very necessary, but right now, for us, it is not what we want or feel we need.
We wanted to hear the advantages of getting the 100% reality that amnio would provide. She kept re-iterating that our child is more than likely just fine and developing normally and that amnio would show just that. Also, other than knowing that yes or know the child has Downs, there is no way to assertain the extent of the Downs - other than a heart defect that would only be seen in an US. So just as no one ever knows if their child is smart, blind, has autism, is good at sports, or has a learning disability, there is no real preparing for what is to come. We asked about waiting lists for babies with Downs in our area and whether knowing a few months ahead of time would help to get special services for our child or not, and she said no. That if the child is born with a special need, we would immediately be hooked up with services.
So:
1. Because the risk is in essence only 3% of Downs and because we would love and cherish such a baby and;
2. Because amnio still carries a slight risk of miscarriage and;
3. Because we are not missing anything for our kid in terms of service and program waiting lists and:
4. Because you never know what kind of journey you are going to be on with your child until that child enters your life out of the womb we are simply going to let go and enjoy the pregnancy and pray that our child is happy and healthy.
If I am ever pregnant again, I am not doing the screening tests. Too much stress for this chickie. On Sunday morning my husband, another couple, and I are heading to the Dominican Republic for a stree and worry free vacation. It is just what we need - some sun, some ocean, and some time to just relax. We are hoping that this is a turning point for us, the first trimester is a nightmare with the morning sickness and migraines, the last week has been torture, so now we are ready for baby bumps and big boobs!
Thank you again for all of your support! Happy weekend!
Jenn
PS I am giving up worrying for Lent.
Baby Boy Julian Frederick
Born August 11, 2011
Hi,
Glad you got more information and are feeling a little better. It is great how you are thinking ahead but like everyone said before, you know there is a great chance your baby will be perfectly fine. Are you having an anatomy scan at 20 weeks? Maybe you will be able to relax a little more after then. Thanks for updating us...I was thinking of you :)
Glad you got more information and are feeling a little better. It is great how you are thinking ahead but like everyone said before, you know there is a great chance your baby will be perfectly fine. Are you having an anatomy scan at 20 weeks? Maybe you will be able to relax a little more after then. Thanks for updating us...I was thinking of you :)
M/C 10/18/10 9w2d...forever loved
It's a boy!
Jenn, Dear, I had the exact same stats as you did with my last child at the Quad Screen. Our genetic counselor wasn't as reassuring as yours, but still put things into perspective. The 20 week comprehensive ultrasound showed him to measure all within normal ranges. He's now almost 3 years old and is as healthy and normal as he can be! (Praise God!) I'm so sorry for your stress. You are so right that we never know the journey we're meant to take with our kids, so we might as well love them each day to the fullest. May the rest of your pregnancy, delivery and first days be blissfully peaceful!
Thank you again for all of your support! We are off in a few hours to the sunshine! Can't wait! DH has thrown his back-out so we have an added hurdle to overcome at the airport! For the love!!
I look forward to being back on line with you wonderful people next week!
Love ya,
Jenn
I look forward to being back on line with you wonderful people next week!
Love ya,
Jenn
Baby Boy Julian Frederick
Born August 11, 2011
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