Husband Support?

erin1102

Hello all.  We were just told yesterday that our baby (I'm 22 weeks) will be born with a partial deletion of chromosome 12.  It's a VERY rare abnormality that they only have 11 documented cases of (lucky me) but all have presented themselves in a wide range from GDD to cranio facial features, etc.  

I'm fully on board with carrying this child to term and providing the best possible life I can give him.  My problem is my husband.  He's a very black and white kind of person and this grey area of not knowing what our son will be like is really tearing him apart.  

Has anyone been through something similar?  I'd like to get him to a therapist (my husband) sooner rather than later because I don't want our differences to destroy our marriage.   

duchess0727

It's hard to get husbands to a therapist.  If he will go, then it is definitely a good idea.  Otherwise, I would try to just give him some time to deal with it.  We went through a lot of ups and downs and a lot of grey.  We have done tons of testing and had a lot of highs and lows and never any black and white.  Our daughter has some sort of unidentified genetic disorder.  We see a lot of doctors and for the most part, have been told wait and see by all of them.  It is hard to live in that grey area but you eventually get used to it.  What got us through the low parts was our older son, who was happy and healthy through it all.  And on top of that, we've come to see that no matter how typical kids are, you don't know how they will turn out.  So while you can't help worrying, you will worry about your kids regardless of how typical they are.  One of the things that really put it into perspective for my husband was close friends of ours that lost their son at 3 months.  I think at that point, my husband realized that despite everything, we are lucky.  It also helped for him to talk to him about the doctors and therapists and tests.  Just having someone who understands what you are going through makes a big difference. We never thought we'd be the parents of a special needs kid, but the other day my husband told me that apart from her heart problems (her only real health issue), he wouldn't change a thing about our daughter.  That was pretty amazing to hear.

Good luck to you!  I know that kind of news must be impossible to deal with.  Wishing you and your husband strength to get through it. 

Sarah

Assembly_Reqd

First off, congratulations on your new baby. We are also raising a child who has 3  microdeletions on chromosome #1. There are 7 documented cases of children with one of Nate's microdeletions and we haven't found any else with the same three. He is truly unique.

Unfortunately "Wait and See" is part of raising any child, regardless if they have a special need or not.

On the plus side, you have a bunch of time to research so that you can truly enjoy your baby when he/she arrives. We were hit with Nate's diagnosis when he was in NICU so it really made a not so fun time even worse. You will probably only find a brief outline of how your child's deletion could affect them. Someone could have the exact same deletion and be severely affected, someone may be not affected at all. I always think of the information as a list of stuff to rule out instead of a list of stuff my kid will have because you really do not know. It is a matter of getting used to the idea of sometimes not knowing and being surprised and delighted when you child ends up accomplishing something they were not supposed to.

We found a research paper on one of Nate's deletions and of all the medical issues listed for the other children Nate only has about half of them. And half of those don't "matter" in the grand scheme of things or have been fixed. You may get lucky, and the deletion will have minor consequences. I encourage you to join some of the chromosome disorder groups to get more information such as:

www.rarechromo.org

or

www.chromodisorder.com

Sometimes men just need a bit more time to process and will take more time to come around. I would just use the next 15 weeks or so to learn what you can about what to potentially expect and hope for the best. You would do the same for your other children right?

Remember that the only one who can tell your baby's story is your baby.

It is a huge lesson in patience. Good luck and big hugs to both you and your DH.

skittles_123

My dh is the same way. Our ds has ASD, so a tad different situation. He wasn't dx until he was almost 3. Like the pp have said, it takes time, but eventually your dh will get comfortable living in the grey area. It is just part of the grieving process of getting a dx such as that. We have no clue what will happen with ds in the future, as he is a high functioning asd kiddo. But, all we can do now is provide him the best possible resources and therapy, so he can have a happy childhood and the best possible chance at living an independent life someday.

hopanka

Is your DH "torn apart" because he would like you to terminate the pregnancy or is this likely just a shock and he will/may learn to adapt? I think it's important for you to find out the answer to this difficult question. I am not going to lie. There are people, a lot of men (but women as well) who just don't think they can handle the emotional/psychological burden and would not want to even try. I know of a family who have a child with DS and the husband absolutely wanted to terminate the pregnancy when they found out. The wife refused and carried the child to term. Fast forward...they tried to make it work, but ultimately the marriage doesn't look like it's going to make it. I think he's moved out actually by now. I have no idea who your husband is, so it's hard to say how you should approach it, but I think you should talk to him and find out what his fears and concerns are. Therapy would definitely be good as well. It's a difficult situation, but both parents should be at least striving toward a common goal and be on the same page as far as where their emotions are regarding this.  

I have a child with ASD. My husband was in denial longer than I was...by about a year, I'd say. But, he's turned out as very much embracing the new situation and I don't think there are issues with that anymore. But, it was a long road and the emotional healing is long-term...maybe even life-long? We love our son deeply, but it wasn't always puppies and rainbows, especially right after the dx. We both sunk into a deep and dark places there for a long while.  

Good luck!

Sobachka

I really should not comment on this because I am a minority on this board. But my only advice would be to have a plan B and think of all possibilities, however distant, and to know that you can take care of your child even if your situation changes.

Now I stop and wish you peace with whatever decision you ake.

Justinlove

You just found out yesterday.  It is hard to process and it is still very fresh for him.  I was a MESS for a while after learning in utero that DD was going to have some kind of possible genetic issue.  And she is literally the only person in the database with her specific anomoly.  We live a life of unknowns.  It was hard at first, but it gets much easier as time goes on.  No one can really know what their child will be like, but it is even harder when the child hasn't been born and you have a lot more "what ifs." 

 Your post leads me to think that he is leaning towards termination.  If that is the case, since you are on opposite ends, counseling would be a good idea.  And not just for him, but for both of you.  I would suggest talking to your genetic counselor and geneticist and find out if there is someone they recommend that has experience in this area.

I am sorry that, what is supposed to be such a time of joy and expectation, has become filled with anxiety and worry.  I hope that you and your husband are able to work through this soon.

PDX

I'm a big supporter of counseling for everyone, so I'm a bit biased, but I'd definitely try to encourage your DH to give it a try. Have you asked him if he'd go with you? the diagnosis effects both you, him, and your relationship, so it makes sense to consider family therapy. Plus, I saw that you have other kids too, so you can always get creative... meaning 10 min together as a family talking about positive things, then one parent takes the kids to the waiting room to play while the other gets 20 min, switch parents so the other gets a chance, etc. Alternate weeks, one for DH, one for you, one together, repeat. Follow the session w/ a dinner out or picnic in the park and it can be a great family night! Or get a babysitter for one or more sessions and you can turn it into a date night. I guess that's my long winded way of suggesting there are a lot of ways of making counseling work w/ schedules and if one partner is not ready for it. best of luck to you and your family!