Ultrasound epic fail followup

FirstTimer02

Hi gals,

Just wanted to share an update since some of you asked me to do that.  about 3 weeks ago at our first ultrasound, we learned that our kiddo had a significant problem with his bones (size & shape).  The radiologist diagnosed it as fatal on the spot and recommended termination.  We are lucky in that we live near a bunch of major medical centers and got hooked up that same day with high-risk perinatal folks at a hospital.  They performed a 2nd ultrasound that day, had a followup one last week, and they've been checking out the pics and possible diagnoses.

Right now it still looks very likely that the skeletal dysplasia (e.g. bone problems) our kiddo has will be fatal because his little chest isn't growing fast enough to make room for his lungs to develop and work once he's outside of me.  We are doing some genetic testing to see if they can identify exactly what the illness is.  It has helped to have 2nd opinions and more careful time to review the information available.  We are strongly considering carrying to term, but are also worried that he'll be more and more squooshed the bigger he gets, and we worry about him suffering and not being able to help him.

**One of the big things we have learned (there are many) is that medical professionals are not always very good at understanding how you see your role as pregnant parents making medical decisions for your kiddo.  In our case termination was recommended immediately and repeatedly without mentioning other options, like carrying to term even if the condition is fatal.  This is what we are weighing.  I'd recommend in Any case that you remember that you are your kiddo's parents.  Medical professionals provide their insights but you decide how to make medical decisions for your kid, as his or her parent, and for yourself.

Some of the most helpful folks we have talked with are a Perinatal Palliative Care team.  They are a team of doctors, nurses, a social worker, and a chaplain who exist specifically to help families with tough care decisions, and who can take a palliative care / hospice approach with babies who are basically terminal.  They have "seen it all" and helped answer a lot of (nitty gritty) questions for me.  They also help w/ things like navigating insurance and finding outside resources.  And acknowledging that you actually have feelings and need to talk them out.  We are lucky in that our team will continue to support us whether we terminate or carry to term.  Here's some info on PPC... a lot of it has some religious undertones / assumptions going on which I personally try to filter out some, but the information is very helpful, especially since no other medical provider presented it to us at all until we found this website and found that our hospital actually has a PPC team!  In other regions I know folks were assigned a special nurse the second they got a tough diagnosis.  It all varies.  https://perinatalhospice.org/Perinatal_hospices.html

Another big thing we are learning is there are a lot of awesome resources out there for little people.  We've been checking them out because if our son makes it he'll be little.  Also there are a lot of bone dysplasias out there, often as a result of random mutations, so it's not always easy to diagnose them or to predict outcomes.  Our experience has been kind of weird in that people have tended to rush to diagnoses or to suggest termination before checking out all the available facts, or before sharing them with us.  I wish people would ask how much you want to know, before making that assumption.

Just wanted to thank you all for your thoughts and prayers, and for continuing to crack me up on the Sept board.

 Thanks :-)

jbBeans

Thanks for the update! 

Again, so sorry that you're going through this, but it sounds like you've found some excellent resources and support.

Take care--you'll continue to be in my thoughts and prayers!  

SoEnamored

Thanks for sharing your story and experience with us.  I am glad to hear that you found a good medical support system. My thoughts and prayers go out to you, your DH and your baby.

freeatlast2014

You are being the best Momma you can be by exploring all options. I will keep you in my prayers.

hmp1

I think about you often and I'm so thankful you found a group of professionals you trust.  Thank you for the update. Continued T&P for your family.

asween02

I'm proud of you for being such an advocate for your son.  Keep up the research and I'll keep sending T&Ps your way.  

Coffee&Cream

MrsLynnyD:

You are being the best Momma you can be by exploring all options. I will keep you in my prayers.

I couldn't have said this better.  Will be thinking of you and your family.

mrs.kapow

You're being very strong and doing all you can. Good luck with your decisions.

SarahJean0

So nice to hear you are remaining "positive" through this whole process. Miracles happen everyday and I am hoping and thinking of your little one. Thoughts and prayer for you and your family to help guide you in making the best choice for all of you.

kbrownie17

I was wondering how things were going. I'm so glad that you are taking your time to make a good decision for your child and yourself, not just rushing to do the first thing they told you. It's a hard time to go though and you are doing so well. Lots of thoughts and prayers going out to you and your family. 

Manx4

Sending lots of T&P your way - keep us updated. 

redneckmomma25

I do no envy you at all.  So glad you were able to get a great team of people to help you with this.  I'm sure it makes a ton of difference.  Keeping you, your DH and LO in my prayers. 

emasters

You're both such strong parents!!  Thinking of you, and wishing for the best outcome for your family

rarazz

Thank you for sharing, you two are amazing parents and are in my thoughts and prayers.

Also YGPM ... Really soon

VineyardMel

Thank you for the update. I'm so sorry that these are the decisions you're facing. I'm really glad you've found such a great support system and will pray that you have peace and wisdom as you decide what to do next.

bosha711

I am so sorry you're facing such difficult decisions. I'll be praying for your family.

kelbel527

Thank you for keeping us updated.  My T&Ps are with you and I agree with the previous comments - you are truly a strong woman and doing everything you can for your son right now.  I'm glad you've been able to find some resources to help.

Meg_Meg

Thank you so much for coming back with your update. 

 

I'm so sorry you are going through this.  My thoughts are with you and your family.

roxyttandme

It's great that you were able have the diagnosis so early to be able to get all these opinions. TDMC is a tough decision. Take care of you....

CCross22

Many continued thoughts and prayers for your family. I, like others, am so glad that you've found folks to support you and guide you as you determine what is best for your little guy. Please keep us posted; we all think about you often (as you can tell)!

numb3rMel

T&P to you and your family during this difficult decision.

FirstTimer02

Aww, thanks very much to all of you.  It means a lot more than is easy to put into words.  Give your kiddos a high-5 for me.  :-)

I want to give a shoutout to the ladies on the Loss board, who are quite super, even though I don't technically have a Loss yet.  I recommend 'em.

alice2Bcheshire

Keeping you and your sweet boy in my thoughts and prayers. He has an amazing mama to watch over him.

swgal

So sorry for all that you are going through.  You sound so strong!