Potential match

onedaychristinak · November 2011

During my 2WW of final FET, we got a call that we had been chosen by a BM due in January! All seemed well and we were waiting for FET results, as well as her next Dr. Appt to decide. After one week of being on cloud 9, we found out FET didn't work. I was heart broken (again) but shockingly ok and focused on out potential match. Same day as beta...pg counselor called to say that BM told her that day that she gas Huntington's Disease. (genetic disease where nerve cells diminish in brain). She is going to ask her Dr. about possible Amnio testing. We now are trying to make an informed decision of what step we should take. Does anyone have any information on Huntington's Disease or a similar issue where a BM had a genetic disorder? Thanks ladies.

onedaychristinak · November 2011

Sorry for typos...darn I Phone!

DavezWife · November 2011

not of much help, I'm sure, but HOUSE, MD (the show) has a story line going right now with one of the docs ("13") that has Huntingtons.

I would certainly involve the advice of a genetic counselor (the best I've delt with have been thru a MFM/Peri's office) and have them review the amnio and what info it gives you.

Sorry about the FET, and GL with the match.

Dr.Loretta · November 2011

Huntington's Disease is a dominant (vs recessive) disorder, where any child has a 50% chance of having the disease. That said, I believe there is a genetic test for it so you can determine whether or not someone is at risk. If the e-mom is getting an amnio, it may be possible to find out before the birth.

Symptoms typically occur sometime in the 30s to 50s. Arlo Guthrie had it, he's one of the more well-known people to have it. It has impact both physically and mentally.

I'd seek the advice of a genetic counselor if you want to pursue this. And then you'd have to decide if you want to adopt a child who will be perfectly fine for the first 1/3-1/2 of their life and possibly beyond, or if you want to adopt a child who will face this in adulthood.

GL with your decision.

bhead81 · November 2011

I have TONS of information on HD as my father-in-law has it. He is on the HD society of America and at one point was the president of the AZ chapter. There are 2 forms of HD - one sets in at as a child/teen the other as an adult. The juvinile form hits a lot faster and the progression is much more severe. There are several other factors as to how quickly it hits and progresses. I am happy to help with any questions you have.

I sent you a PM with my email address.

militarywife2b · November 2011

Just wanted to tell you GL with the placement, I hope you get all the information you need to make an informed decision and sending a (Hug) as well.

inlovewithB · November 2011

toothpastechica:
this post breaks my heart...would you give up your biological child if they ended up having a heart problem, or diabetes, or a learning problem, or gets hit by a car when they are 5 and suffer from brain damage? what makes that child less deserving of your love....when you have already decided you are ready to be able to love a child you do not give birth to....please gather all the info to help you be the best parents to the child if they do have health issues, and if you cant bear the thought of having a child whos less then perfect, please rethink your motivation for adoption...this seriously makes me want to cry that someone would say no to a child because of genetic issue.

Your post makes me sad and is very judgmental. Have you ever lived in a household with a disabled child?? I have!! My parents will never be "empty nesters" because they have a 29 year old child that cannot live on her own. After my parents die my siblings and I will be responsible for caring for our sister. This is one of the benefits of adopting!! As adoptive parents we get to decide some of these things. There are no guarantees that a healthy baby will be a healthy child or a healthy adult, but we get the gift of making these decisions through adoption.

onedaychristinak · November 2011

inlovewithB:
toothpastechica:
this post breaks my heart...would you give up your biological child if they ended up having a heart problem, or diabetes, or a learning problem, or gets hit by a car when they are 5 and suffer from brain damage? what makes that child less deserving of your love....when you have already decided you are ready to be able to love a child you do not give birth to....please gather all the info to help you be the best parents to the child if they do have health issues, and if you cant bear the thought of having a child whos less then perfect, please rethink your motivation for adoption...this seriously makes me want to cry that someone would say no to a child because of genetic issue.
Your post makes me sad and is very judgmental. Have you ever lived in a household with a disabled child?? I have!! My parents will never be "empty nesters" because they have a 29 year old child that cannot live on her own. After my parents die my siblings and I will be responsible for caring for our sister. This is one of the benefits of adopting!! As adoptive parents we get to decide some of these things. There are no guarantees that a healthy baby will be a healthy child or a healthy adult, but we get the gift of making these decisions through adoption.

Thank you for this. I have been having a VERY difficult time and questioning myself. The PP made my heart sink so I appreciate your support.

onedaychristinak · November 2011

toothpastechica:
this post breaks my heart...would you give up your biological child if they ended up having a heart problem, or diabetes, or a learning problem, or gets hit by a car when they are 5 and suffer from brain damage? what makes that child less deserving of your love....when you have already decided you are ready to be able to love a child you do not give birth to....please gather all the info to help you be the best parents to the child if they do have health issues, and if you cant bear the thought of having a child whos less then perfect, please rethink your motivation for adoption...this seriously makes me want to cry that someone would say no to a child because of genetic issue.

These boards are to help through difficult times and use one another for resources...not to judge. I will not respond to the accusation that I am not ready to adopt. As, like others on this board, I have been through a tremendous amount of loss and struggle and can't afford anymore negativity. I'm sorry if you took my inquiry on this disease offensively.

Dr.Loretta · November 2011

toothpastechica:
this post breaks my heart...would you give up your biological child if they ended up having a heart problem, or diabetes, or a learning problem, or gets hit by a car when they are 5 and suffer from brain damage? what makes that child less deserving of your love....when you have already decided you are ready to be able to love a child you do not give birth to....please gather all the info to help you be the best parents to the child if they do have health issues, and if you cant bear the thought of having a child whos less then perfect, please rethink your motivation for adoption...this seriously makes me want to cry that someone would say no to a child because of genetic issue.

Yeah, this post does not help. At all. There are people who avoid having bio children because of genetic issues, and there are people who make all sorts of similar decisions, whether for bio or adopted children. While there are adoptive parents out there who are ready, willing, and able to parent children with special needs, it's not for everyone. I'd rather a couple pass on a child with potential health issues that would result in a failed adoption, than to take on something they just couldn't handle.

inlovewithB · November 2011

@Oneday...

I am so sorry that you are having to make such a hard and important decision!! I would just take time to educate yourself, get the results of the amnio and if needed try to consult with a physician regarding the results. Please know that this isn't the ONLY BM that is out there. Your baby IS out there it is just a matter of finding him/her. Praying for you during this difficult time!!

bhead81 · November 2011

toothpastechica:
this post breaks my heart...would you give up your biological child if they ended up having a heart problem, or diabetes, or a learning problem, or gets hit by a car when they are 5 and suffer from brain damage? what makes that child less deserving of your love....when you have already decided you are ready to be able to love a child you do not give birth to....please gather all the info to help you be the best parents to the child if they do have health issues, and if you cant bear the thought of having a child whos less then perfect, please rethink your motivation for adoption...this seriously makes me want to cry that someone would say no to a child because of genetic issue.

This post is upsetting to me for a couple reasons. First we are here to support each other and not to judg. Secondly as choosing to take on a child with a terminal illness is a tough choice that not everyone can make. I know first hand how HD can be and have worked with adults and kids with it and do not know if I can even take it on in an adoptive child. I have worked with many disabilities but taking on a terminal illness is different. Please remember we are here to support each other.

bhead81 · November 2011

Sorry for the spelling/formatting in my last post...posted from my phone.

Dr.Loretta · November 2011

toothpastechica:
this post breaks my heart...would you give up your biological child if they ended up having a heart problem, or diabetes, or a learning problem, or gets hit by a car when they are 5 and suffer from brain damage? what makes that child less deserving of your love....when you have already decided you are ready to be able to love a child you do not give birth to....please gather all the info to help you be the best parents to the child if they do have health issues, and if you cant bear the thought of having a child whos less then perfect, please rethink your motivation for adoption...this seriously makes me want to cry that someone would say no to a child because of genetic issue.

Another thought for you, stranger lady. If an adoptive parent ended up finding out about a medical condition when their child was 5, they would be no more likely to give up that child than a bio parent. But if a bio parent knew before a child was conceived or born that there was a risk of a serious disease, there's a possibility they could do anything from avoiding having kids, to doing IVF with genetic testing, to aborting a fetus with a serious problem.

So in reality you're comparing apples and oranges.

We were faced with a decision on whether our profile would be shown for a birthmom with a history of a genetic condition, and strong possibility it would be passed on to her child. It was a condition that a member of DH's family had dealt with, and it was hell on earth for them and him. I don't think DH would have had the emotional capacity to deal with it, and I would never force him to decide to parent in that situation. Our SW was very adamant that we shouldn't take on what we couldn't handle, and there was no shame in turning down this situation.

To the OP, please let us know how it goes. It's a tough decision, and I just hope the best decision is made all around.

silliestbunny · November 2011

@Oneday... hugs to you. I hope you get the answers you need.

ByHisGrace7 · November 2011

The first failed adoption we had back in January had to do with a horrible genetic disorder. Email me at maryme107 at yahoo dot com if you have any questions or want to talk. I don't want to post too many details on here but praise the Lord 3 days after we had to make that heartwrenching decision she found her forever family. She has a very rare disease and they were equipped to help her like she deserves to be helped. To the people to tell you shame on you for letting a genetic order possibly change your mind...you really can't say that until you've been there. True, if you have a bio child you don't get to "pick and choose" what they have or don't have but, with our first failed adoption, we chose to walk away because we knew we could not give that sweet girl the love and care she needed. Surgeons said that she needed a parent to stay at home with her around the clock for the rest of her life to provide care...and we both have to work to pay the bills and knew that I could not quit my job to stay home with her (believe me, we tried to work it out on paper to where I could but when the bottom line came in we just couldn't). We prayed that God would show make it clear to us His answer and he did once we saw the neurosurgeon cry.

Anyways, just email me if you have any questions or anything! I rarely check PMs.

onedaychristinak · November 2011

I want to thank all of you for your support. It has been a trying few days for DH and I. I will be in touch with those of you who offered to give me more info. We are going to take some time and wait until the BM goes to her OB before any decisions are made. My OB/GYN is also doing some researching and consulting with a Genetic Counselor. Thanks again ladies.

bhead81 · November 2011

I am glad to hear that you are taking the time to seek resources. Even with the mom having HD there is a 50/50 chance the baby wouldn't have it. My husband's family was very lucky that all 3 natural children did not get HD gene. I will be praying for you and am here if you need any info.

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