Update (long!)

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Roobear's picture
Last seen: 4 years 4 months ago
Joined: 03/26/08
Posts: 343
Update (long!)

Hi everyone..I've cut and pasted this from the Sept 11 board cause I'm too lazy to type it all again!
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"....so 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.

update is that today I had my fetal echo, and the heart looks completely normal. Very relieved!

Nell4Him's picture
Last seen: 1 year 7 months ago
Joined: 10/25/06
Posts: 2455

So glad that the heart looks good! :bigarmhug:

heateras's picture
Last seen: 4 years 10 months ago
Joined: 06/01/06
Posts: 192

((hugs)) That's a tough spot for any parent. I'm glad that you've made the decision that's right for you, and I know that you both will be great parents to this little one! I'm so glad everything else looks to be okay!

Prosthetics have come a LONG way nowadays!

fittoac's picture
Last seen: 4 years 3 days ago
Joined: 05/05/08
Posts: 383

Wow, Meghan.... not the news you ever expect to hear, huh? I'm sure that's been a really hard pill to swallow but I really admire your positive attitude. And I think you're right-- this kid is likely gonna grow up to be as normal and adventurous as any other, though without one hand. Will that pose some difficulties along the way? Of course. Will that stop him/her from living a full life? Absolutely not. Every day people suffer accidents/illnesses which result in the loss of a limb and they eventually learn to live successfully without it. Your child will have the advantage of never having known life with two hands, and therefore won't miss it! Likely, this will be a lot harder on you and your husband than it will ever be for your kid!

My close friend's brother was nearly killed in an IED explosion in Afghanistan in 2005. As a result, he suffered traumatic brain injury and lost his right arm below the elbow. The brain injury has forever changed his life, but the arm is almost an afterthought. Seriously... he has this crazy bionic arm prosthetic that allows him to do just about anything. He's even been skiing and stuff! Amazing!

I wonder if it might help your husband to watch the movie that's out right now called Soul Surfer. It's the true story of Bethany Hamilton, the girl who lost her entire arm in a shark attack while surfing when she was 13. You probably know the story. She's since gone on to be a professional surfer and has won a bunch of competitions and stuff. So inspiring and incredible.

Anyway, these are just two examples of how people who don't have 10 fingers and 10 toes can live really full lives just like the rest of us who have them. I completely understand why this is so terrifying for him, but I bet when he's had more time to adjust to the idea, he won't be so scared. And once that baby is born, you can bet he'll be just as amazing a dad to him/her as he is to Hailey. Smile

Muddee's picture
Last seen: 1 year 11 months ago
Joined: 03/13/08
Posts: 2119

You are in a very tough situation, good for standing your ground on having this child, he/she will be perfect as is.

I once watched an episode of Extreme Home Makeover the family had adopted several children who were born without legs, it was just amazing how they could do everything like everyone else even though they were different. With your support your son/daughter will learn to live a full life.

Thanks for updating us on how things are going, good to hear that most of the tests are coming back clean.

Last seen: 1 month 2 weeks ago
Joined: 08/02/06
Posts: 98

Meghan--you're amazing attitude and outlook will carry you through the toughest time. I couldn't have said better what Ali said. My thoughts were exactly what she wrote.

Roobear's picture
Last seen: 4 years 4 months ago
Joined: 03/26/08
Posts: 343

Thanks guys...the support we've been getting, both here and IRL has been amazing. Sniff sniff...feeling very loved and hormonal right now!!

les27's picture
Last seen: 3 years 1 day ago
Joined: 05/21/08
Posts: 840

I know you've probably gotten a ton of these stories, and I don't know if they are helpful or not, but I just had to share

I have a friend who grew up with my husband, he was born without both of his arms and both of his legs. He never let it stop him. He is in a wheelchair and is able to maneuver it with his stub. He does have to have help to eat or drink, but they just have to place whatever he's eating/drinking in between his stub and chest and he's able to go from there. He was on the football team in high school, helping to coach and cheer on the team....he has just graduated from college and just got a job at a high school as football coach. He seriously has the best attitude about everything, and everyone in town who has known him his whole life don't even notice he doesn't have any limbs, because he is a regular guy. He even got married last year to a beautiful girl, and now that he is graduated and has a good job they are going to be trying for their first baby soon.

I already said this on the sept 11 board but :bigarmhug: to you and DH, I know everything will turn out okay for you guys Smile

Last seen: 1 year 8 months ago
Joined: 03/16/15
Posts: 53852

Wow what a rough time you have been through! I am so so happy to hear the baby is healthy!

Another thing to think about is that since your baby will be born without this arm will adjust to it like its just a normal every day thing, I have a feeling he/she will probably be able to do EVERYTHING everyone else can do and probably better in some aspects! Prosthetics are amazing nowdays...my dad knows someone who has a prosthetic arm and I've overheard him telling some family members that that guys arm is better than a real arm with all the things it can do! I just saw an article in the navy times about one of the new prosthetic that are just prototypes but eventually be on the market...wow! One of my P90x videos one of the guys have a prosthetic leg....its P90X and he was putting me and my hubby to shame!! Anyway I guess what I'm getting at is nothing can stop you if you want something badly enough. He/she will have a normal and wonderful life because you are a wonderful and caring mommy and I know things will be allright! :bigarmhug::bigarmhug::bigarmhug: 's to you!

Last seen: 4 years 1 month ago
Joined: 05/31/08
Posts: 1131

Oh, wow Meghan. I'm sorry to hear about this, but like others have said I am sure your child will be happy and healthy in every other way and be able to do anything any other kid can do. It's great that you can have the perspective to see that it's "just an arm." I can understand your husband's fears as well, it would be heartbreaking to get that news, and scary to worry you might not be up to the challenge...It's only been a few weeks though, and it will take him longer to work through the initial fears than it will take you...like you said, you see far worse scenarios every day in the NICU. I'm sure if he is as great of a guy as you make him sound, he will come around soon, and of course as soon as he sees that little baby he won't care about the arm anymore!