Worried Father/Husband...

[eddie_k]

This is my first post so let me give you some background...

It was our first pregnancy, and everything was going great. We had a visit with the perinatalogist (sp?) for due to family histories with neurological issues (my wife) and heart defect (me). The ultrasound looked great but toke the doctor ~ 45mins to get an “acceptable” picture of the face and lower jaw. This was a big step for us as my wife was worried to due her family history. Her father has had two strokes and her sister was born with an encephalacile. On the Sunday of 27 weeks I went on a business trip (my last one before our due date) to Charlotte, I get a phone call at 1230 am Monday that my wife is not feeling good, what she described as severe upper right quadrant back pain. She has had kidney stones in the past and was worried about the effects that one could have on the pregnancy. It persisted until the next morning where she called the doctors and they sent her to the hospital. She drove herself the 40 minutes to the hospital where she was admitted. At first they thought it was pneumonia due to some fluid in her lungs so she was put on antibiotics. I returned Tuesday morning to the hospital. For three days she battled the resp. issue (her pulse Ox was 91%) and was given 4L/hr of O2. She was contracting the whole time and was given meds to help control it (this had no benefit). On Friday she was given cervical exam and was 2 cm diluted so they changed her meds to Mag Sulfate to help with the contractions more and given two shots of steroids for the baby (Colleen Marie). At this point we thought we were in for the long haul to get as far as possible for Colleen. I was there all day and went o my parents to sleep nearby. At this point there were no issues with protein in urine or lowered platelets or any normal symptoms of HELLP/preeclampsia (her BP was okay). On Saturday night here liver enzymes dropped and the doctors decided a c-section was to be done on Mother’s day no less. Well not all the doctors the one coming on decided to do a vaginal birth and went to break her water. When this was done the baby’s HR dropped to 60bpm. My wife was rushed off to have an emergency c-section while I waited outside the OR. I was told by our OB that there was issues with our daughter due to some birth defects (they were unable to ventilate her due to a malformed airway. She passed in my arms 30 minutes later. My wife was still in recovery and had not known what had happened. So at this point ~3 months later we still have no answers. All genetic tests have come back negative. My wife recovered in a matter of days. She is back to work and looking to get pregnant again. We were told that her risk for this again goes up significantly (is this true?) We are looking to do this all again soon. I don’t think I left anything out. Does anyone have any input or thoughts to share that might help me/my wife? We are both looking for some answers about this. Thanks for taking the time.

Ed

[julie f]

Ed,

I am so sorry for your loss. Losing your baby is the most devestating thing, my heart breaks for you and your wife.

Was your wife diagnosed then with preeclampsia and HELLP Syndrome? Here is a link to our "Ask the Experts" section about recurrence rates in future pregnancies : http://www.preeclampsia.org/forum/viewtopic.php?t=331&SearchTerms=sibai

If I were in your position, I would order all of your medical records, from the hospital and from your doctor's office, and then find a very experienced perinatologist to review them and offer you preconception counseling. After having had preeclampsia, there are many underlying disorders that the peri will likely want to test your wife for before she becomes pregnant again. (Things like blood clotting disorders, autoimmune disorders, etc.) Here is a website that you can use to search for a peri in your area that specializes in hypertension in pregnancy : www.nasshp.org

Again, I am so sorry for your loss. I will pray for peace and comfort for you and your wife. Please keep us updated on how you are doing.

Julie (27)
Zachary James, 7/22/03-7/27/03, born at 26wks - severe pe

Miracle in progress... #2 is due February 2005!!!

Southern California Coordinator

[mada]

Hi ed,
I am also sorry for your loss. I agree with Julie....Getting in touch with a doc from nasshp would be great as well as testing for underlying disorders. I am glad your wife has recovered physically well...You are both in my thoughts.

Mada Harpster-moderator for pregnant again

Sam 6-29-00 36weeks P.E.
Ben 11-03-01 No P.E.

[eddie_k]

The doctors have been very vague about the diagnosis. They have called it atypical atypical preelampsia/HELLP. My wife is a RD and has gotten all her records and thank God she can understand them. We actually made the desicion (based on the info in the reords) to see the specialist who works at the Hospital of Univ. of Penn. because my wife was worried about all the tests that she should be having. No one had told us that we needed to followup with any specialist. She had to initiate her OB to get bloodwork done to check to see if her issues had returned to normal. She wasn't 100% when she left the hosp. She was pretty bad in the hosp. and I fear I will lose her as well.

[josiah1112]

I'm so sorry about the horrible ordeal you have gone through.
Please continue to search for answers. There are great doctors
out there who will be able to give you answers. It's like finding
the pieces to this gigantic jigsaw puzzle. A good doctor will
look to find links. I have seen it go both ways with women that
have had babies with birth defects. I have a friend who had a
baby that was malformed. The baby was stillborn. She went on
a few years later to have a healthy baby boy. However, I did meet
another women who had two babies die due to being born with no
kidneys- both of them. She was advised by doctors not to try again.
Please make sure your wife takes the appropriate time to heal. I
know it's hard when one is left with empty arms... and the desire for
a baby is so strong. I went for a consultation with a wonderful
doctor who is an authority on pre eclampsia and he recommended
that I wait a year before trying again. Wishing you the best.

Gloria mom to Josiah 11/12/03- 12/4/03 @ 26wks pre e
Moderator- Foro Latino
Future Adoptive Mom

[angelkat]

Ed,
I am so sorry for your loss. Sending prayers of comfort and strength your way...

Hugs
~T
Moderator Grief and Loss
Mommy to
Drew(14)PE 37 wks
Ky (12)PE 34 wks
~i~ Katlyne(12/9/02-04/02/03)25 wks
Casey - 34wks Born 7/29/04
Katlyne's Tribute Site
http://forevernetwork.com/lifestories/lifestory.cfm?Archive_ID=10971&Directory=/Archives/MountHope&Sort=V

[annegarrett]

We are so sorry for your loss. We are happy to help you find the right care. Please feel free to call us or email me.

Anne

Anne Garrett
Executive Director
Preeclampsia Foundation

[eddie_k]

The doctors have given us as much as 25% chance of the genetic issues reaccurring only because that is ths highest it can be if it is a genetic issue and since they don't know what the issue is that number is not real.

As far the pre-e/HELLP, after doing some more research the numbers for reaccurance are high but the exact number seems to change a lot from source to source. I have seen 10-60% for pre-e and 5-60% for HELLP. Is there any good sources for info on this? HAs any one seen some good information about prevention and/or things to do the help with it?