Prayers needed - has anyone been through this?

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Minx_Kristi's picture
Joined: 01/02/09
Posts: 1261
Prayers needed - has anyone been through this?

This story is heart breaking.

A close friend of mine has been trying for a baby with her husband for the last 6 years without success. They decided to go down the IVF route to discover they'd got pregnant naturally. Yesterday they went for the sexing scan to be told they were having a girl and that she has a hernia growing in her chest cavity, squashing her heart and lungs Sad

I found this online to describe it medically...

CDH is the abbreviated name for Congenital (born with) Diaphragmatic (of the Diaphragm; the musculomembranous partition separating the abdominal and thoracic cavities and functioning in respiration) Hernia (a general term used to describe a bulge or protrusion of an organ through the structure or muscle that usually contains it). Congenital diaphragmatic hernia occurs in 1 in 2000- 5000 births and accounts for 8% of all major congenital defects.

Could you all please please please pray for her baby girl?? Also, if you know anyone who has been through a similar experience please let me know!

Thanks so much!

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

They all will definitely be in my prayers. I have no experience with it though. How heartbreaking. Do you know what the drs have told her?

combatcutie's picture
Joined: 04/04/07
Posts: 2117

How heartbreaking!!! Thoughts and prayers are being sent to your friend

CamelNoodle's picture
Joined: 07/28/04
Posts: 908

I am sorry to hear this news.

I had a similar situation, but a different medical diagnosis. If the baby is not going to survive to birth, I have some advice regarding perinatal hospice. (And also a good book).

I hope that this is something that can be surgicall corrected, either now (in utero) or after birth. :goodluck:

MissyJ's picture
Joined: 01/31/02
Posts: 3212

Count me in on the positive thoughts and prayers.

I found this online from one of our Children's Hospitals here in the states:

http://www.childrenshospital.org/az/Site476/mainpageS476P4.html

While obviously, this is a serious issue, hopefully your friend can take heart in this section:

What's the long-term outlook for my baby?
The outlook for babies born with CDH is increasingly positive. However, babies born with CDH can have long-term problems and often need regular follow-up care after going home from the hospital.

I remember that one of my nephews had a hole in his diaphragm that impacted his heart/lungs. I do not know if this was exactly the same issue or not but I do recall it being referred to as a type of hernia. He was in the NICU and then had surgery to repair. He did have follow up care during his early years but I am pleased to report that he is now older and a dad expecting his 3rd child now. Smile I'll be praying that your friend has a similar outcome for her dd!

Please do let us know!
~Missy

Audgee's picture
Joined: 08/24/05
Posts: 305

I know someone who has been through this - her little girl just turned 4 (couldn't be 5?). It wasn't an easy road in the beginning. Through knowing this person I have know of many babies with this condition, not all with happy stories, unfortunately. My friend would probably be quite open to discussing this with your friend. PM me an email address and I can pass it on to her

CaityA83's picture
Joined: 05/08/09
Posts: 855

No advice, just wanted to say that I am so sorry to hear about this. I think it should be a given that anyone who had to go through infertility should get to have an easy pregnancy. How heartbreaking!!

Spacers's picture
Joined: 12/29/03
Posts: 4100

I hope your friend has a lot more information than you've shared here. CDH can range from very mild to very severe, it can affect the organs above the diaphragm or those below it or both, and treatment can range from one simple surgery after birth, to surgery in utero along with multiple surgeries after birth. UCSF Medical Center in San Francisco pioneered the prenatal treatment of CDH, which has led to a wonderful increase of survivability for babies who a few years ago would have died before birth. If your friend hasn't already had an intensive ultrasound exam to diagnose severity and which organs are at risk, she needs to get one ASAP. She can't start making decisions until she has all the information.

http://fetus.ucsfmedicalcenter.org/cdh/

Minx_Kristi's picture
Joined: 01/02/09
Posts: 1261

Thank you so much for your well wishes ladies, you're all truly amazing!

TBH, they haven't been given an exact diagnosis and CDH is the closest thing I could find to what my friend has been told by the Doctor. She has had another appointment today and is being flown to Alderhey children's hospital in Liverpool, UK for more intensive scans. She has however been told that baby has very little chance and ladies, I know she will not be giving up on this baby girl! She has wanted her for too long.

Thank you again. I will KYP.

xx

Minx_Kristi's picture
Joined: 01/02/09
Posts: 1261

I've just spoken with her and yes, it is CDH and apparently the worst form Sad Baby has also got a genetic defect that hasn't yet been diagnosed and Doctors have asked her about aborting!! My friend says that this baby will be her miracle whether she lives or gains her wings..... just the saddest thing EVER!!

xx

MissyJ's picture
Joined: 01/31/02
Posts: 3212

{{{{{{HUGS}}}}}} I am so sorry to hear about this diagnosis. Please encourage her to join our site. We would love to help offer our love and support throughout her journey. Feel free to give her my email address at [email]missyj@pregnancy.org[/email] if she needs simply to vent or if I can assist in any other way.

Thank you for letting us know. Sad

~Missy

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

"MissyJ" wrote:

{{{{{{HUGS}}}}}} I am so sorry to hear about this diagnosis. Please encourage her to join our site. We would love to help offer our love and support throughout her journey.

Overwhelmingly yes we would LOVE to give her as much support as she needs.

meggyrn's picture
Joined: 02/16/09
Posts: 2263

:lurk:

Your friend is in my thoughts and prayers also. Having suffered IF and undergoing IVF I can only imagine how difficult this is for your friend. Big hugs to her!

AlyssaEimers's picture
Joined: 08/22/06
Posts: 6560

:bigarmhug:

Joined: 02/24/11
Posts: 1651

Sending all my love and prayers to the little angel! I hope they find a way to fix this before it causes permenant damage

Rivergallery's picture
Joined: 05/23/03
Posts: 1301

Just want to lend my prayers, and admiration for your friend. I love to see the love given to the unborn.

celticbandgeek's picture
Joined: 06/14/10
Posts: 950

I'm sending all of my thoughts and prayers to your friend and her LO. I can't even imagine hearing such a devastating diagnosis and trying for so long. She is courageous and strong in her determination to give her little girl every chance.

:bigarmhug:

Minx_Kristi's picture
Joined: 01/02/09
Posts: 1261

Thank you all so much for your thoughts and prayers. She is being so incredibly brave and I admire her so much for that. I always say if it was me, I'd be a mess but I guess you have to stay as positive as you can!

They went for the scan in the UK and Docs confirmed baby T has the worst case of CDH. Fortunately, they detected no other defects which is a huge plus. She is due to go back in 3 weeks for another scan/update. As far as I am aware, they're going to try and keep baby T in the womb for as long as possible and she will be given steroids to help support her lungs.

So yes, hopefully she will stick for another 17 weeks..... thanks again everyone and I will KUP.

xx

SuzyQ16's picture
Joined: 02/01/08
Posts: 879

I will keep this family in my T&Ps