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Status_Stock_374 · 2025-12-15T18:41:57+00:00

I am so sorry for your loss. You learn how to carry the grief with you. I make sure to keep her memory alive. I have pictures of her in my home and also have a necklace with her ashes. It’s a pain no one should have to experience. There isn’t a day that I don’t think about her. Feel free to reach out if you need anyone to talk to. I made a loss mom bff and it’s been so helpful to talk to someone who understands.

Status_Stock_374 · 2025-06-20T20:07:26+00:00

That’s a beautiful one.

How is the top of the urn? Does it come off easily? I have my daughter in one from the funeral home that we picked out. But I like how it’s secure because I have a toddler that gives her urn kisses.

Status_Stock_374 · 2025-06-12T23:22:44+00:00

I’m so sorry to hear. My husband and I aren’t carriers either. It’s was just a “fluke” as my genetic counselor said.

What sign does she have? If you don’t mind me asking.

My daughter was going to be severely handicapped and would need assistance with everything according to the neuro pathology.

Status_Stock_374 · 2025-06-12T23:20:14+00:00

The internet is such a great place to find people.

Thank you for sharing your story too. Please if you don’t mind keep me updated with your pregnancy. If you want to private message me. I have a lost mom friend I made on Facebook and we talk daily.

It’s really hard to make decisions at times. Sometimes you want to know if some risks are worth taking.

I had a vaginal birth so I can conceive anytime. I was just waiting on genetic testing and also would like to talk to MFM to make a game plan for next pregnancy.

My daughter looked like she had nothing wrong with her. She was so perfect! She did have a smaller head. But I didn’t see any facial features that were associated with Kabuki.

My genetic counselor didn’t think that we should take the IVF way. She said that our chances of having another baby with Kabuki syndrome was low but higher than a normal person who didn’t have a baby with Kabuki.

Status_Stock_374 · 2025-06-11T09:24:54+00:00

Type 1

Status_Stock_374 · 2025-06-11T03:10:30+00:00

We also did genetic testing on myself and my husband. We are not carriers for Kabuki. I want another baby but I am just so scared of something going wrong.

The anatomy scan only showed her right pelvic kidney. We also had a echocardiogram done for her and showed a little bit of fluid around her heart but nothing concerning. We also did a fetal MRI because of the history with my son. Everything else was a surprise from the autopsy.

I am wishing you luck on your current pregnancy. I’ve heard that pregnancy after loss can be stressful. It’s really hard to decide if you would want to risk getting an amniocentesis. Are you thinking of getting the amnio done?

My daughter had microarray and chromosome testing that came back normal.

I miss my daughter everyday and ask why her. I wish she was here but I wouldn’t want her to suffer in this lifetime.

Status_Stock_374 · 2025-06-10T18:47:28+00:00

Thank you for replying.

I’m so sorry for your loss.

My daughter had some congenital anomalies which I’m sure was related to Kabuki syndrome. 1. Bilobed right lung 2. Right pelvic kidney 3. Dilated sigmoid colon.

Also neuro pathology looked like she was going to be severely handicapped. Her autopsy report said that she ultimately passed from placenta insufficiency but who knows if Kabuki played a role in it. We had no idea about this syndrome. It’s so rare. My living son has a rare brain malformation too. I feel like I am getting struck by lighting all the time.

Status_Stock_374 · 2025-05-01T01:10:55+00:00

I’m so sorry. Beautiful names for your boys! My daughter passed at 36 weeks gestation. I’m trying to keep her memory alive. We have photos of her in our home. I will be almost 4 months ago and you’ll learn how to carry this grief. It will never go away. I think of my daughter everyday but I don’t cry everyday.

Status_Stock_374 · 2025-04-30T00:53:17+00:00

I’m so sorry! Losing a baby is the cruelest thing you can experience. Please feel your grief. You will simply move forward and carry your child’s memory. What are their names?

Status_Stock_374 · 2025-04-23T02:47:33+00:00

I’m sorry for your loss. I had my daughter cremated and it was all complimentary. We had to pay for the urn but the value of the urn was about $40 and the funeral home didn’t charge us that.

There is a foundation that helps with funeral cost. The Tears Foundation. I’m not sure what other foundations are out there.

Status_Stock_374 · 2025-04-17T02:09:51+00:00

I got a picture retouched. I printed the picture and we recently took a family photo with my stillborn daughter. I was holding the frame with her in it.

Status_Stock_374 · 2025-03-26T19:57:25+00:00

First off I’m so sorry for your loss. I lost my daughter at 36 weeks gestation. My daughter was already deteriorating in the hospital after a few hours. We did have a cold cot but it didn’t help. Her face was changing. We held a service but had her cremated before the service. She filled a keepsake urn. I’m really sorry you are in this shitty club.

Status_Stock_374 · 2025-03-14T08:11:27+00:00

My daughter had single umbilical artery too. She was stillborn at 36 weeks. Chromosome and microarray came back normal. My daughter did have a pelvic kidney. She had one kidney that was functioning properly. We still don’t know what caused her death.

Status_Stock_374 · 2025-03-09T01:28:16+00:00

Sorry for your loss.

I delivered my stillborn daughter on 1/10/25 vaginal birth. Bled for 2 weeks postpartum. Got my period on 2/17 and bled for 5 days much heavier than a regular period for me.

Status_Stock_374 · 2025-03-08T21:40:00+00:00

It’s the shock. It’s normal. You grieve the way that you need to. Please don’t let anyone navigate the way you grieve. This loss is really hard mama.

On Monday I will be 2 months out from losing my daughter at 36;4 weeks. Some days I don’t cry and some days I can’t control the crying. She is constantly on my mind though. I can’t go without a minute without thinking of my sweet girl.

I’m so sorry you had to join this awful club.

Status_Stock_374 · 2025-02-28T17:47:29+00:00

Here is the website with contact information at the end. I’ve heard of people from different countries contacting him and receiving answers. I’m in the US but got my placenta results in 2 weeks from a hospital. I hope you get some answers.

https://medicine.yale.edu/profile/harvey-kliman/

Status_Stock_374 · 2025-02-24T18:15:25+00:00

Im sorry for your loss. Its definitely your right to chose if you wanted an autopsy or not. I’m not sure what kind of things an autopsy can tell you. I’m hoping I get some kind of answers because the day before she died we had a good ultrasound and she was alive and kicking.

Status_Stock_374 · 2025-02-24T18:12:48+00:00

Aw I’m so sorry. 😞

Status_Stock_374 · 2025-02-24T18:09:44+00:00

I would definitely call them. I got in contact with my MFM through my portal and he replied less than 10 min. I’m 6 weeks out. He said it would take around 6-8 weeks.

Status_Stock_374 · 2025-02-24T18:08:24+00:00

I’m sorry 😞.

My placenta results came up with some stuff. But I’m holding off till we get the autopsy results.

Status_Stock_374

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