Been MIA, lots going on...long!

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Roobear's picture
Joined: 03/26/08
Posts: 343
Been MIA, lots going on...long!

Hi Ladies...I finally feel like I am in a place where I can share with you everything that has been happening here lately. Its been a rough month.

Went to my NT scan, and it took forever. Didn't think anything of it, it was long with DD as she wouldn't roll the correct way. Got home that night, and my OB called. You know thats never a good sign. She told me there was a "measurement discrepancy" with the upper limbs. Mentioned something called Holt-Oram syndrome, which affects the growth of the bones in the upper limbs, and 75% of these kids have a heart defect. Referred me to a MFM specialist at work, who got me in 2 days later for a detailed anatomy.

Needless to say, we were devastated. I work in the NICU, I see what these kids go through with multiple heart surgeries, and I'm not willing to put my child through that (personal belief, not meant to offend anyone). Went to the anatomy scan and got more information. He got a good look at the baby's heart, and he didn't see anything abnormal. In fact, everything on the baby looks normal, until you get the bottom of the humerus on the right arm (the upper bone). The arm just stops. There is no forearm, no hand. He doesn't think its H-O syndrome, he thinks its an isolated defect, either from an amniotic band, or a clot. For whatever reason the arm did not develop below the elbow area. He recommended genetic testing to make sure it wasn't part of some syndrome, and wants to do a fetal echo to be sure about the heart.

We had CVS (chorionic villi sampling) done at 14 weeks (a few days later), and went to genetic counselling. They also felt this is an isolated finding and not related to anything genetic. Got the genetics results this week, everything is normal.

Had another scan at 15.5 weeks, just to make sure everything is still fine, and to measure the little arm. It seems to be growing appropriately, measures the same as the left, and the baby moves it freely. Having the echo next wednesday, and then the 19 week anatomy the week after. If everything is still fine, I will be discharged from the MFM and only see my OB from now on.

So...while I am very sad to hear this news, I am confident that this child can have a full and happy life. I've made contacts for us to talk to about dealing with this type of congenital amputation, with preparing for prosthetics, things like that. My DH on the other hand..he shut down. For 3 weeks we barely talked about it, he was distancing himself from the pregnancy, he basically felt that this was enough to consider termination. I don't agree. If there is nothing else wrong, then this is a healthy baby, and I will not terminate a healthy baby just cause s/he isn't perfect. We had a few ugly talks, to the point that I was worried about this seriously damaging our marriage.

I am happy to say we have made progress. He has admitted a lot of his fears to me, and they stem from his fear that he isn't strong enough to be the parent this baby needs, and that he worries this child will struggle to do everything in life. He wonders if its fair to "do this" to a child. He has agreed to talk to anyone I want to talk to, and we are going to get some couples counselling as well. I basically told him flat out that I won't terminate, and that I hoped he would still be here in the end. He isn't going anywhere, but he's terrified. I can appreciate that, as I come from seeing devastatingly sick babies everyday, so to me, its just an arm. He doesn't know anything but healthy kids, so this is overwhelming. More than anything right now I wish we hadn't found out so early. Its only because we found out at 13 weeks that we could even consider termination. If we found out at our regular anatomy, there wouldn't be any options. He said if we had found out then we would "just suck it up and deal" I told him thats exactly what I need him to do.

So...I've struggled with whether to post this news. We've shared it with some close friends, and my parents know. We haven't told his family as his parents were in Arizona, and he didn't want to worry them while they were away. They are back now, so I think he will be telling them soon. I don't want people to think he's a terrible person, cause he is an amazing father. He's just having a tough time with this. Not that its been a walk in the park for me, but I at least have the benefit of being a nurse, being connected to the baby already, and having the ultimate say in any decisions cause its my body. I can't be forced into a situation, the way he can.

Sorry this is so long! If you made it through, thank you! I promise I'll post more, I'm here everyday, just haven't been posting. Keeping my fingers crossed that no one else gets any bad news around here.

Cherrykitten's picture
Joined: 07/03/08
Posts: 700

Oh Meghan i'm so sorry you've had to go through all this. And your husband sounds like a normal guy when it comes to this. They want to "fix" everything and when they can't they don't know how to deal with it. I've been doing clinial hours in the NICU for my LC and i'm amazed with what many parents have to deal with on a daily basis. Keeping my fingers crossed that everything else goes smoothly with your pregnancy.

indianajones's picture
Joined: 01/21/07
Posts: 1486

Meghan, I'm glad you checked in, and trust us with this. Know that we're here to support you the best we can. I admire your approach, and gathering info and resources is a great place to start.

Darren's response sounds totally normal, and I can see what a strain it would put on your relationship, but I'm glad you've been able to start communicating more and seeing more of each other's viewpoints to move forward.

Have you thought about how to prepare Hailey?

jonibug's picture
Joined: 11/27/06
Posts: 781

It is truly amazing to me how kids with disorders are. They don't see it as limiting at all. My mom loves to tell the story of when she was a kid, she got in an argument with one of her sisters that has spina bifida. That sister got so mad at my mom she pushed my mom down the stairs, despite dealing with hand crutches to help keep her upright. My fh was born with the cord around his neck and he didn't breathe for a little too long. He has a disorder that the doctors said would prevent him from doing most fine and gross motor activities (ride a bike, learn to write, etc). His parents didn't tell him until later he had a disorder and they acted like he didn't - he learned how to ride a bike, he took drawing classes in college.

I'm sure there are support groups you guys could look into in your area, that could be very helpful.

I'm sorry you got this sort of news, but I can already tell this baby will be very loved.

Nell4Him's picture
Joined: 10/25/06
Posts: 2455

:bigarmhug: You certainly HAVE been through a lot, haven't you.

I agree with you, as long as the baby is "healthy" an arm is an arm and does not affect general well being.

The fact that you are already looking into how to support this child and this type of birth defect. That is wonderful that you are able to do that BEFORE the baby comes. Self-education and realizing there are support systems out there is a wonderful thing.

I'm glad your hubby is coming around. I don't blame him for being afraid of what trials you will go through as a family. He will learn how to cope and how to help out and it will work out for you guys.


heatherliz2002's picture
Joined: 02/02/08
Posts: 2273

:bighug: I'm so sorry that you're having to deal with this- it sounds like it's been a scary and trying time for you guys. I think your husband's reaction is understandable, and I'm glad that he's been able to start talking about how he feels. It's normal to be scared when you find out that things aren't going the way the you thought they would, and you're placed in a new situation. I think it's great that you are able to communicate about it now, and to talk to whoever you need to in order to gather information, work through it, and process everything. My thoughts and prayers are with you as you figure everything out.

Maelani's picture
Joined: 01/09/10
Posts: 275

Man... You have been through alot, but I want you to know, your child CAN live a normal life. I have two stories to share with you about kids with similar disabilities that your baby has.

First is a kid I went to school with. His arm was amputated just below the elbow. I never asked him what happened or anything, its just who he was. He didn't let it slow him down. He played sports for the school teams, he was a wicked smart guy, and not to mention he was very cute lol!

Another is a friend of mine who's son has a Limb Difference (one arm is smaller than the other) and he is living as normal a life as you can expect. He plays sports, he wants to learn how to wrestle, he is smart as a whip and generally doesn't even realize he's different. He has a younger brother and sister, and loves being a big brother to them. He teaches them all about the world through the eyes of a 5 year old, its pretty cute lol!

I understand what your husband is feeling like. Like someone else said, men have this desire to fix things, and he probably feels pretty helpless knowing he can't fix it. I'm glad he came around though. I'm sure that you both will find that not only will this kid lead a fairly normal life (yes, people will stare, he will probably get teased in school, but who doesn't?) but will provide inspiration for your whole family. Trial through adversity always makes for a strong personality. Good luck!

LauraMae78's picture
Joined: 01/10/11
Posts: 969

:bigarmhug:Sounds like you have a strong marriage! Im sorry you guys are going through this, but i agree with you, its just an arm. The baby is healthy and in the end, that is all that matters. i pray that the rest of the pregnancy goes smoothly for you both.

mandi04's picture
Joined: 08/10/03
Posts: 2272

:bigarmhug: That is a lot to go through. I agree that your dh's reaction doesn't sound too abnormal and I am sure when this baby is born he'll love him/her just the same, he just has to come to terms with baby being different than he was expecting.

I used to babysit for a little boy who had amniotic band syndrome, he was only missing a few fingers but it didn't stop him from doing everything a kid with all their fingers would do. Your baby will never know a life with that part of his/her arm and so he/she will learn to do things without it just like any other baby learns to do things with the parts they have.

ekcanada's picture
Joined: 05/06/09
Posts: 1707

I am so sorry about the baby! I am happy to hear it is perfectly healthy otherwise!

I think any parent would feel they are not able to handle the disability. I was so happy to hear you are continuing with the pregnancy (personal belief on my part as well) but I understand your reasoning for considering terminatation.

My neighbor has no forarm on his right hand. We actually first met him while he was hanging drywall in his garage (by himself). He is also able to handle a newborn and his 3 y/o on his own with no trouble.

You LO will have a long and fullfilling life and you will be a better person for it!

Thanks for sharing your story. We will be celebrating along with you when your special LO makes their appearance!

nori_garsi's picture
Joined: 10/31/06
Posts: 2069

Seems like things have been rough these last few weeks, but I'm glad things are starting to look up. DH's reaction seems like a normal one given the news, but I'm sure it was hard to hear. He probably just needs some time to process all that information and once the baby is here, I'm sure he'll be in love with him/her. It seems like you're doing all your research and making sure that you are well-prepared to help baby adjust to what I'm sure will be a very fulfilling and wonderful life. I hope things continue to improve for you and DH and that the rest of your pg goes smoothly. Hugs.

les27's picture
Joined: 05/21/08
Posts: 840


Oh Meghan, you have been through so much! I just wanted to give you a virtual hug

:comfort: :bigarmhug:

cherylfhorn's picture
Joined: 08/24/08
Posts: 600

I'm happy you were comfortable enough to share with us your situation. You have a wonderful attitude and your child will be happy and others have said he won't miss what he never had to begin with.and will be successful in probably more ways then a lot of us. I'm really happy to hear ur husband is excepting it better and by working thru it and the support system i know u will succeed. I think god gave you a special gift to work in the NICU and if anyone is able to handle this u have the special love to do it. If you need anything please let me know.

Roobear's picture
Joined: 03/26/08
Posts: 343

Thank you so much for all your support! We have gotten amazing support IRL too, and it truly makes all the difference. DH actually joked about my belly today, first direct comment he's made in a month. Eased my heart a little. Have an appointment with the prosthetic people for the first week in May.

I'm finding out all sorts of interesting things...apparently they like to fit the baby really early, around 3-4 months, so they get used to seeing something at the end of their arm, get used to the weight, build muscle etc. And there are specific prosthetics to help them learn to crawl. It seems like a lot of kids just figure out how to do things on their own though.

Thanks again ladies. yeah, we have a lot going on, but we're managing. We still have way better than a whole heck of a lot of people out there.

bamsmom's picture
Joined: 05/05/07
Posts: 1635

Goodness you sure have been thru alot and I am so glad that you finally felt comfortable sharing this news. I am so happy that the baby seems to be healthy otherwise and he/she will live a very normal life even with the cong. amptutaion. One of DH's best friends does not have an ulna or radius on either arm. His hands do not have a true range of motion as they are fused to his elbow, however, he can do everything that we do with the exception of going thru the drive thru. He is one of the best golfers we know and he is a Vice Principal at the local middle school! You guys will be ok... I will keep you in my thoughts and prayers!

MandyMommyto1's picture
Joined: 06/27/09
Posts: 534

I'm sorry you're having to deal with this...but it sounds like you have a great attitude about it. The "good" thing in this is that this baby will never know any different - it will grow up learning how to use it's amputated arm just like a real arm, so I bet it will be much more of an adjustment to you and your family than it will be for the baby.

I can totally understand your DH's reaction....I probably would have been the same. I'm sure by the time the baby is born he'll be ready to treat this child just like any other, but that's a big piece of news to wrap your head around. Luckily he still has several months to get used to the idea Smile

mom22sofar's picture
Joined: 02/20/09
Posts: 306

So very sorry for your struggles. I think you are both having totally normal reactions to a difficult situation and you are able to have some time to do some research and figure out what the possibilities are. I have been reading a lot as well (we had a less than ideal NT scan) and I am really just blown away with how amazing children with disabilities can be and what wonderful and rich lives they lead. keep us posted on how things are going.