Our Potters Babies *Born* -  (New mem, just lost ps baby, birth) (360 views) Notify me whenever anyone posts in this discussion.Subscribe
From: travelingsch1/28/16 5:51 AM 
To: All  (1 of 5) 

I am a new member looking for support.

My story:
I was 35 weeks pregnant and started having contractions. Went to my clinic and they did an NST. The NST showed the need for a bpp/ultrasound at our small hospital due to decels in heart rate. I checked into the hospital and was given two medications to stop labor. Ultrasound at the hospital showed zero fluid around the baby and baby was measuring slightly small. My ob kept asking if my water had broken and I said I had not noticed anything unusual. Doc decided to transport me by helicopter to hospital in a large city. On the flight my contractions start back up. At high risk ob hospital the us is repeated and verified that there is no fluid. Amnisure test shows my membranes were not ruptured. Contractions continue and OB decides to not stop them. Nicu staff says since my baby is 35weeks he will have a 95% chance of survival but that there is a 5% chance of him not making it. Labor continues quickly and I am almost forced into a c section due to tachycardia. Ultimately I am able to avoid a csection and baby Andrew is born weighing just over 5lbs. Immediately baby has severe trouble breathing. He makes it to the nicu but they can't seem to keep his co2 levels down. His lungs are not developed and they say they are worse than a 26 week baby's lungs. The team works for 8hrs to keep him alive. They finally discover he has no kidneys or bladder which explains the zero fluid and underdeveloped lungs. Andrew was born 1/15/16 and passed 8 hrs later. My husband and I are shocked. The obs said the anatomical us was normal and my fundal heights were normal. It is hard to go from 35 weeks pregnant with no complications to a baby that has passed. I saw my doc today and he had no answers about if this would happen again. He was encouraged that both my husband and i's medical records show we have two normal kidneys. I found this support group while trying to research recurrence statistics. Any support, advice and/or encouragement would be graciously accepted.
P.s. I read the posting rules but was not sure if I missed anything on my title.

 Reply   Options 

From: faithterry2/1/16 9:57 AM 
To: travelingsch  (2 of 5) 
 4902.2 in reply to 4902.1 

I am so very sorry for your devastating loss.  Most of us now have warning going in that the baby has Potters.  How shocking to find out as you did.  My heart goes out to you.  It is a long road of grief, but you are not alone.


From: travelingsch2/3/16 9:52 AM 
To: faithterry  (3 of 5) 
 4902.3 in reply to 4902.2 
Thank you for replying to my post. Do you have any advice? Could you help me get connected with the Facebook group?

From: faithterry2/4/16 10:54 AM 
To: All  (4 of 5) 
 4902.4 in reply to 4902.2 

The best advice I can give you is to allow yourself time to grieve and to surround yourself with people who are supportive. Hopefully you have some close family and friends that will be comfortable letting you talk about your baby.  Be gentle with yourself and allow the tears to flow.  To connect with the Facebook group you can log on to Facebook and search for Potter's Syndrome Forum.  It is a closed group so you will need to request to join.  If you give me your Facebook name I can let the moderator know that you will be requesting membership.  She does check people out to be sure we aren't getting trolls on the site to harass people.  Sending hugs,  Faith


From: ~Michele~ (MicheleKS) Posted by host2/9/16 1:01 AM 
To: travelingsch  (5 of 5) 
 4902.5 in reply to 4902.1 

Hi there,


I monitor the FB group.  If you tell me your first name I can make sure to look it up in the list and add you!  Sorry for the delay in responding as we use the FB page more then Delphi now due to it being more secure and less likely for unwanted visitors who troll to visit us and cause havoc.   I am sorry for your loss of Andrew and welcome you to our FB group as I know you will find the support you need in our Potter's family online.  Just do a FB search of Potter's Syndrome Forum and then let me know your first name or even your first initial of your first and last name and I can find you that way also I am sure.  I will watch for your request.







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