Lurker coming out...again.

CEOwife

Hey ladies. I am here each and every day...several times a day.  I just don't think I am in a position to post as often as some of you amazing, supportive angel mamas.  I haven't found the right words just yet.

We lost our son Isaac on May 31 of this year.  We met with the genetic counselor  today and did not really get any information :-(   So far, all his chromosome testing came back normal and he did not match for the 300 syndromes they tested for.  The doctor and genetic specialist from one of the top few hospitals in the state said...looking at Isaac's chart, U/S pictures and information their best medical guess would have been trisomy 13 or 18 but he did not have either.  

Today, they took a more intensive look at our family history.  They are meeting with a team of genetic specialists (from a few other top hospitals) on Wednesday to try and determine if his four complications (cleft lip, cleft pallet, club right foot, hydrocephalus) potentially lead them to a gene mutation.  The lab still has his DNA from my amnio so after further review on Wednesday, they might be able to order further testing to look into specific mutations.  DH and I may or may not get tested as well... all depending on what the team of genetic specialists think.  

All in all, as of now....still no answers, still no cause, still no recurrence rate. The doctor should call us on Thursday or Friday at the latest to let us know if they speculate a specific mutation and if/what further testing will be done on his DNA and potentially on DH and I.

Oh yea...and when I asked if I could be considered high risk for future pregnancies, they chuckled.  Most people apparently want out of their office and feel reassurance in being told they can see their regular practice.  I want to be with them so I know I am closely monitored the whole time with more often scans and higher trained maternal fetal medicine doctors and specialists.  We agreed to co-treat regardless of the outcomes. I can go to my practice for weight, blood pressure and HB. I will go to the perinatal office for all scans and appointments outside of HB and weight checks.

 Thanks for listening...I know this is the only place that understands where I am at...sitting with no answers and no real plan on conception because of our anxieties for recurrence.   

eroplane

I am so sorry to hear about the loss of your son Isaac. Welcome to the board, there are a lot of supportive ladies here. 

Here is a link with some great info for loss momma's:

https://community.thebump.com/cs/ks/forums/thread/66361040.aspx

It sounds like you have some good physicians on your side. Big hugs to you.  

CEOwife

Thanks for the link. I've been here since June 1.  I posted an intro when I first came on board and have posted here and there since.  I find so much support in others posts. I hope to one day soon be in a place to support others.

Heatherhah

**Ticker warning***

 

I am so sorry for the loss of your sweet baby boy Isaac!! I hope you find answers soon!! We are all here to support you. Hugs!!

Bayberry12

It sounds so bad to say, it's nice to see you here again.  But I think you know what mean.  

I remember reading about your little Isaac when I first came on this board.  I really think having no answers is the hardest part.  When something is out of our control, we search for a reason, for some reassurance that this can not happen again, and when these highly trained Drs. and specialists can't tell us anything, we are just left with nothing but questions.  

While they don't "think" it was a genetic issue with our daughter, if I do become pregnant again, I will also be co-treated by the MFM Dr. and monitored closely, and I do find some comfort in that.  But, at the same time why didn't they do that in the first place!?

I hope with time your anxiety is less. 

jbranden12

I am sorry you haven't been able to get any answers that will make you feel more comfortable going forward. I struggle with that as well. Patricia was perfect in every way they could see or test for.

I also struggle with thinking about whether or not I want to be "high risk." We have been told that all the monitoring and scans in the world would not have saved our little girl. I think the only way would be if I had been hooked up 24/7 to fetal heart monitors. I think I won't know how I'll feel until I'm there.

HollyBee1022

I'm so sorry about the loss of your son Isaac and that you're still waiting for answers about why he passed away.  Losing your child is hard enough without wondering why it happened and if it could happen again.  I'm thinking about you and your family right now, and I hope the doctor gives you some peace of mind soon.

Carolee

I'm sorry you weren't able to get answers.  On one hand, it was easier for me not having real answers because it made me feel like it was unlikely to happen again.  On the other hand, not knowing was hard because if there was an underlying issue, I wouldn't know about it to get treated.  I hope you'll be able to come up with a plan after the specialists meet on Wednesday. 

CEOwife

Carolee:

I'm sorry you weren't able to get answers.  On one hand, it was easier for me not having real answers because it made me feel like it was unlikely to happen again.  On the other hand, not knowing was hard because if there was an underlying issue, I wouldn't know about it to get treated.  I hope you'll be able to come up with a plan after the specialists meet on Wednesday. 

 

This is exactly how I feel. I am almost hoping that with all the heads together if they still come up with nothing...the recurrence rate must be minimal.  I know they are doing their best to protect of from further heartache.