Any advice for a co-worker?

[Sunshine 1528]

I am an HR manager and had an employee come in to talk to both me and his former manager (he was transferred a half hour away a couple years ago to our large manufacturing site - we are at corporate).

He and his wife are pregnant - about 27 weeks - in trying to find out the sex of the baby, they ended up finding out that their daughter has some form of skeletal dysplasia. (Seems there are over 100 different types, mainly genetic from my research). Part of our discussion was that they had been told that her legs and at least one arm have fractures in utero. (Logically seems serious to me).

They had originally refused amniocentises (sp?) due to the usual horror stories from friends, however, they had gone to Stanford for a second opinion. The previous manager and I did some web searching and have found that there is a good possibility that amnio will give them additional information in order to make the decision as to whether to continue the pregnancy or not.

The wife is so upset she just wants to end it, but in speaking with my employee after work tonight, he has said she is willing to get the amnio based upon our suggestions after this morning's talk. (We were looking at it from the standpoint of making a decision based upon all possible information available).

Obviously whichever way they decide to go, the wife will most likely need counseling as she is so torn she cannot even shower because she doesn't want to see her stomach and imagine what her little daughter is going through.

Any advice from experience or from close friends who have gone through something similar? I know we can suggest counseling, etc, but for someone who is so distraught already, what are some of the options? (Another hurdle is that she speaks mainly Spanish and it is important she feel comfortable with whatever avenue she seeks in order to get through this devastating time.)

TIA for any suggestions

 

[dlavie]

Jacque,

About 20 years ago, my wife and were trying to start our family. At 10 weeks my wife had a miscarriage. Ultrasounds at that time said the other two feti were still advancing. (multiples do not run in either family). We were blessed with two physically healthy children. They both had extreme developmental issues. They're infancy was a nightmare for us. We were older first time parents too.

In all honesty there were many a time I had wished things had turned out differently or if we'd known we might have terminated the pregnancy.

The kids are 19 now and they are the reason I live. They have taught me more about life than anyone could have. In retrospect, I would not have traded the "path taken" for anything.

I am very empathetic for your friends, I have no advice and only have kind thoughts to offer. I would want as much information as possible before making the decision. As a friend you might support the decision they make, be the sounding board.

 

[Sunshine 1528]

Thanks for sharing Dave.

I had an older brother who was mentally retarded, physically could take care of himself about the same as a 5 or 6 year old. Only lived for 13 years do to an immmune deficiency disorder.

Mom and Dad were older, were 35 and 37 when they had me and my younger brother. Their first didn't stop them and I have nothing but fond memories of my bro.

I shared this story, but also felt it was a bit different since my buddies daughter seems to have some very physically painful challenges. They went in today for an amnio, hopefully they will find out how genetically deficit she may be. Will also help if they have another one down the line which is something they have thought about.

Thanks again for your thoughts - I am hoping they can make a decision and feel they did the best they could - that is all any of us can do.

 

[johnson03]

I don't have any helpful advise for your co-worker and his wife. I hope they can sit down with a maternal-fetal specialist and get their questions answered so they can make a well informed decision. It sounds like this will be the most difficult time of their lives (no matter how things turn out). My thoughts and prayers will be with them.

 

[crazystepr]

What an awful, awful thing to have to go through. I have never had children so can only imagine what this couple is going through. Like the above poster, I have no advice--I can only give my sympathy and best wishes. I am so sorry for them.

Allison

 

[jasper]

My sister went thru a similar situation this summer. After multiple miscarriages she thought at 16 weeks she could finally "get excited" but the next ultrasound showed that the baby's brain was being pulled out by a spinal cord injury (very rare).

The things that helped her the most were: being referred to specialists, having every test possible, the very best doctors explaining everything, a patient advocate that went to all appts with her to take notes and ask questions she couldn't even fathom at the time, and ultimately being at a non-religious hospital when she went into labor at 24 weeks. She's catholic and fortunately for her, the "decision" was made for her when the baby was still-born.

Since then, regular therapy has really helped. They also went thru the rituals and had the baby baptized and buried.

Good luck - they are in a tough spot right now and I hope that they are able to find appropriate help and ultimately peace.