Devastated and heartbroken

A place for those bereaved to receive and offer support
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Re: Devastated and heartbroken

Postby claricemaala » Thu Aug 20, 639237 3:25 am

I am so sorry for your loss. There is nothing we could have really done. You have done your best and do not blame yourself. My son also died of NEC in 2/2010. I just celebrated his anniversary . My son was born 31 weeks and 1 day and he was healthy with APGAR of 9/9. Did very well. He was even transferred to NICU stedown at 8 day and was perfect and beautiful the morning on 2/8 but went downhill on 2/8 after I received aphone call stating that they "think he has blood in stool". He went downhill overnight and died on my arms 2/9 with fulminant NEC. No surgery was done because he was unstable almost 4 hrs after the diagnosis of NEC.
I blamed myself for sometime for what happned. Also blamed the doctors and actually reviewed all his medical record. I was a nurse practitioner at the facility where my son died. There was no indication that he was sick. All his labs were beautiful the morning off. I guess I was looking for somnething that I can pinpoint to blame but I really did not find any. I even blamed myself for not giving him breastmilk daily . At that time they were alternating breastmilk with formula.
I blamed myself for everything. Rememner it was not your fault. You did eveything you could do.
Pls be gentle to yourself. PAN me if you need to talk. There is also a little forum in BBC taking about NEC and stories. Hope that might help you.
Mom to 6 year old. Born at 33 1/2 weeks after preeclampsia and abruptio placenta.
Angel boy -Michael- born 2/1/2010 at 31 weeks. Had pre eclampsia and hospital bedrest at 27 weeks. Died due to NEC. Forever loved and missed
Rainbow baby due Feb 2012. Hoping for a looooonnnnnnngggg uneventful pregnancy.

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Re: Devastated and heartbroken

Postby cmccaffrey » Tue Aug 18, 639237 4:35 am

I am truly sorry for your loss. My husband and I lost out firstborn, Mason, 4 months ago to this terrible disease. Losing a baby has been the worst thing that has ever happened to me, but having had him was the best thing that ever happened to me. I learned so much about myself and learned how to love so deeply in a way that I never knew I could. I only hope that I will be given a second chance to share this love sometime in the future. And I know how hard it is to make it through each day. I moved into my parents house of state right after everything happened and couldn't return home for almost 3 months. I couldn't eat and I couldn't sleep. I am just not starting to get back to a new kind of normal. I would really suggest seeing a grief counselor if you can find one in your area or even joining a support group. Counselors will help you talk through your pain and help you find safe outlets for your grief; like exercising, drawing or writing. Just know that there are a bunch of women on here who know what you are going through, who genuinely care for you and will give you lots of encouragement.

I will be thinking of you and praying for peace for you.
Christa (25) & J (26)
Mommy to:
Mason born 10.11.10 @ 30+3 wks due to Severe Pre-E. Only lived 2.5 days
Noah born 2.1.12 @ 38 weeks thanks to lots of doctors visits, LDA, Lovenox and no preeclampsia!

learn more about our story...

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Re: Devastated and heartbroken

Postby m » Sun Aug 09, 639237 3:49 am

Jackie, I am so sorry for your loss. I completely understand how you're feeling. After I lost my son, an acquaintance who also lost a child told me "this is the worst thing that will happen in your life." I'm pretty sure that's a true statement. It is a horrible thing to have to live through, but you can do it. There were many days when I felt that the only thing that would make me feel better was to be with my baby again. It takes time, but you will start to feel better and more like your old self again. It can be very helpful to talk to someone about your feelings, especially if you're feeling so down that you're considering suicide. Have you talked to your doctor about trying some antidepressants? Don't blame yourself -this wasn't your fault. Consulting another doctor is a great way to get answers to some of your questions, but I have come to the conclusion that there will always be some unanswered questions. Lots of "what ifs". Try not to dwell on them too much. There are many ladies on this forum who have survived the loss of a precious baby and this is a great place to come for encouragement. I hope that you can find some answers and some peace.
DS 2/5/09 - 2/13/09; severe PE at 28 weeks
DD March 2010; PIH, preterm labor at 36 weeks, 10 days NICU

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Re: Devastated and heartbroken

Postby miamibunnie » Sat Aug 08, 639237 4:08 pm

Wow Jackie....right now as I write this I can stop crying. My baby passed away last yr and I was in the hands of Physcians that really had no knowledge what so ever. They were googling preeclampsia....they kept telling me never had a pt get PE at 6 months....Just stay strong its hard but I think with this board you will find great ladies here that can understand what your going through. It will take sometime....for you to feel a little better mentally. Just pray and NO its not your fault sometimes there are just things that it is difficult to answer.

XOXO honey....keep us posted on how you continue to feel!!!!
Lisette 37 Hubby 37
Lisette 36 / Luis 36
1996 25 weeker due to Eclampsia with seizures daughter alive today 15 yrs old " Julyzah Caridad"
2010 23 weeker due to severe preeclampsia my angel left us

2011/27/July we beat preeclampsia and made it to 36.5 weeks 6lbs 1oz baby girl "Kendall Lauren " pe-free just bp started acting up.
Thanks to God, my doctor, Lovenox and Lda.

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Re: Devastated and heartbroken

Postby uncskristy » Sat Aug 08, 639237 3:46 pm

You can not blame yourself! I know that is easier said than done. Nine months ago, I lost my son Cooper and I still have moments where I wonder what the * I did wrong. Even I know that I did nothing wrong and have been reassured this by numerous doctors.
I was 24 weeks and hospitalized for a small tear in my placenta. My BP was in the 150 range but calmed down to normal with bedrest. The bleeding stopped and Cooper was doing well so my husband and I had just gotten adjusted to the idea of a long hospital stay until we knew that Cooper would survive. I was hospitalized on a Monday and on Thursday, six OBs (including four high risk OBS/Maternal Fetal Medicine Specialists) entered my room and told me that my kidneys and livers were starting to fail so they needed to deliver in order to save me. It was no secret that Cooper was not going to survive at this point. Cooper lived for 22 hours. We are all still in disbelief as to how quickly it all happened. Everything was fine had been fine at my checkup two and a half weeks earlier. Although I knew at the time my life was in danger, I did not fully understand how close I was until weeks later when I started reading stories about women that have lost their lives. The pain seems unbearable at times but I try to make it through those moments determined to live my life for Cooper. And for the rest of my family because it would be worse for them if they were dealing with the loss of myself as well. I found this site to be of great comfort even though I do not post a whole lot. Knowing that there are women out there that understand has given me a great deal of strength. I do advise speaking with a psychologist. I can not imagine being able to make it through losing a child without some "help". I also started a blog so I could share my feelings in writing to my friends and family. Just writing about it helps me a lot. I think my computer is probably going to quit working soon because of all the tears I have dropped on it since May :)
Mommy of Three Boys- Davis 10/4/2007(No PE, overbaked at 40wks, 2 days),
Cooper 5/20/2010-5/21/2010 (born too early at 24wks, 2 days due to severe PE) and
Blaine 10/11/11 (35wks, 6 days, mild but quick moving PE)
Wife to Matthew since 6/11/2005

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Re: Devastated and heartbroken

Postby brandib » Sat Aug 08, 639237 2:27 am

Jackie please don't blame yourself. You didn't make this happend or "let" this happen. It sounds like you were very sick by the time they took Mia. I am so very sorry you are hurting this badly. Your grief is very raw right now. I pray you have someone to stay by your side right now and a good support system. Many women have lost their babies in and out of utero because of preeclampsia and I know you said " I didn't have eclampsia", but I do believe preeclampsia kills more than eclampsia does. One is not necessarily worse than the other. Most of us preeclamptics would be seizing without the mag being given to us in the hospitals. I am so sorry your precious Mia had to be born so early and developed NEC, but it is not your fault. You loved her you pumped your milk for her and it was out of your hands. I surely hope you can find friends in many of the mothers that have felt what you feel right now and gone through what you are going through right now. *HUGS*

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Re: Devastated and heartbroken

Postby trish9 » Fri Aug 07, 639237 10:10 am

I am in tears reading your post, I am so sorry about the loss of Mia. We also lost our beautiful son to severe PE and HELLP. It was the worst time of my life. I thought about dying alot too. Everyone kept saying how lucky I was to be alive, but I didn't feel that there was anything lucky about surviving when I had to bury my son. This forum has been a godsend - finding others who truly understand is what kept me going. I think of my boy everyday and will always miss him, but it does get better.
Pre-eclampsia and HELLP at 23 weeks +2 days
My little love Alexander. Born and passed on January 3rd, 2010.
Underlying disorders: IgA nephropathy, chronic hypertension and Hashimoto's thyroiditis

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Re: Devastated and heartbroken

Postby jean » Fri Aug 07, 639237 9:25 am

hi..I just wanted to write and let you know that you are not alone. We lost our son last year due to NEC. I had HELLP syndrome, and our son was with us for 25 days. He passed in our arms as well, and it was/is the most devastating and horrifying thing I have ever experienced. My hubby and I are trying again, in hopes that I could last longer and have a living child. But so far trying to conceive is not working for us.

Anyway...I just wanted to let you know that this bulletin board is very informative and helpful. We are all here for each other, and that does help. I hope that you can find some peace in this difficult time.
Our first son was born and passed in Feb of 2010. Born at 29 weeks due to HELLP and passed due to NEC. We miss him every day. :~(

Our second son was born at 39 weeks gestation in Nov of 2011. No HELLP or pre-e! Took LDA starting at week 12 and went off of it at week 38!

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Re: Devastated and heartbroken

Postby kerisue » Fri Aug 07, 639237 9:17 am

Jackie, I'm so sorry about the loss of your daughter Mia. I lost my daughter to preeclampsia too. Just after her death when the pain was so acute I felt suicidal too, well not so much that I wanted to die but more like I was just desperate to be with my baby whether in death or life. I think that's normal for a loss of this magnitude. Needing to blame someone, including yourself, is also common. I still struggle with this. Preeclampsia is not well understood and doctors have a hard time predicting who will get it and who won't. From what I've learned, by the time you started showing all those symptoms, the disease was well established and was probably too late for the doctors to stop it at that point. Like Blythe said, it can progress slowly in some and very rapidly in others. When I was admitted to the hospital they were telling me I could still make it to 32 weeks... and then hours later I was gravely ill and being delivered.
Nothing is going to make the pain of Mia's loss less, but I hope you find some support from this forum, I know I have.
Mama to Millie
born June 2010 @ 24 wks. gestation due to my severe PE and CHF
lived 25 days, loved and missed

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Re: Devastated and heartbroken

Postby blythe » Fri Aug 07, 639237 7:30 am

Jackie, my heart is breaking for you. Understanding what happens in a preeclamptic pregnancy is even harder when it's compounded by the loss of your beautiful baby.

Again, if you're still feeling suicidal, please tell you loved ones and a heath professional immediately, the rest of this can wait.

If you're "just" grieving, let me give you some information that I've found over the years. I don't know anything about NEC but I can tell you a little about preeclampsia / PE (around here we use a variety of abbreviations, I like "PE" but you'll see lots of variation).

PE is diagnosed with two bp readings of at least 140/90 taken at least 6 hours apart (after 20 weeks gestation) and 300mg protein in a 24-hour urine collection (often indicated by +1 on a screening dipstick, but the screening dips are notoriously inaccurate in both directions because of hydration).
Diagnostic criteria for severe preeclampsia include at least *one* of the following (
* Systolic BP greater than 160 mm Hg or diastolic BP greater than 110 mm Hg on 2 occasions 6 hours apart with the patient at bed rest (our experts, top doctors in PE research and treatment, seem to use 160/100)
* Proteinuria greater than 5000 mg in a 24-hour collection or more than 3+ on 2 random urine samples collected at least 4 hours apart
* Oliguria with less than 500 mL per 24 hours
* Persistent maternal headache or visual disturbance
* Pulmonary edema or cyanosis
* Concerning abdominal pain
* Impaired liver function test findings
* Thrombocytopenia
* Oligohydramnios, decreased fetal growth, or placental abruption

From your narrative, and again I'm no doc, it sounds like you were experiencing quite a few of the criteria for severe PE. PE is very unpredictable. We have had members meet the diagnostic criteria very early in pregnancy and stay pregnant (under close surveillance) to 37+ weeks. We have also had members go to a noon appointment perfectly healthy, and by midnight be close to death in intensive care.

Very recently, scientists have started to understand what might be going on in PE. I love this article: ... 724fa_fact

I have to head to work, more members will be along soon. Again, I am so sorry for the loss of your daughter Mia.
Heather, mom to
#1 7-18-03 - 5#8oz 37 weeks PE/PIH
#2 8-11-06 - 6#14oz 37 weeks PE/PIH
#3 9-10-09 - 5#10oz 37 weeks PE/PIH

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