Devastated and heartbroken

[caryn]

Hello, my name is Jackie and I am 27 years old. I live in Long island, NY. My husband and I were pregnant with our first child-a baby girl named Mia. We were so estatic and happy. My due date was 1/31/11.My pregnancy was going great up until October when I swelled up like a big balloon. Im a petite girl 5"2 115 lbs. shoe size 6. I couldnt fit into a size 10...I had no ankles. My obgyn was a regular dr not high risk but i never knew i needed a high risk because no one in my family ever had complications. My dr was highly recommened too so I trusted him. In mid Oct. I was told that my baby had possibly IUGR and/or SGA but my Dr never explained anything to me and I tried to do research myself and didnt come up with anything...I figured since I am petite and was born small and my DR isnt worried then everything is ok. He sent me for ultrasound in the MFM dept. in ***** and the DR. there told me not to worry. Meanwhile, i had all the basic tests done -down syndrome, trisonomy and everything was great. I was also showing low amniotic fluid at around 7-8 but my dr told me not to worry. Either way, I went to a family friend ultrasonographer on my own which my DR never recommened. Her Dr. wrote a report to my dr that I only saw afer my baby girl passed away. No one told me anything in the meantime, thinking that my Dr would explain everything to me. The only thing that my family friend said is to do a 24 hr urine but never fot into details. When i saw my Dr on 11/9/10 I asked him about the report and he said "its a book report" I asked him about the 24 hr urine and he said theres no need for me to do that, that my blood pressure is fine. I asked him about my swelling and he said its "normal." I was in grad school with a few wks left into the semester and i was trying to finish school so i can be home with my baby. I asked my Dr if i should be on bedrest and he replied no. However, a few wks prior he made a joke that Im eating too much because i gained weight quickly- which I told him i really wasnt eating a lot. I complained to my dr also that my head felt as if it was underwater and he and his nurses told m it wasnt pregnancy related. I also had pins and needles feeling in my hands and was referred to a hand specialist. I was advised that this was normal in pregnancy and not to worry. I also developed a slight outer ear infection which i never had in my whole life...I was given drops but decided to not take them and do garlic oil insted because I was very careful about not taking anything to harm my baby. I was so careful wit what I ate, no meds, I tried my best to have the most healthy pregnancy. My glucose test came back negative. But on 11/17 I had my every 2 wk ultrasound scheduled at the hospital, but felt shortness of breath and saw my urine output was not the same- alot less and dark. So i peed in a cup that morning, called my Dr and they told me to come in to them before i would go to my ultrasound. I came in and saw my Dr's partner which I met for the first time and she said my bp was 140/90 and my protein was +4 and to go to the hospital. She never explained much to me and I thought that I was going for my ultrasound and if anything they would put me on bed rest or hospitalize me for a few days. The ultrasound that day showed that my baby was growing but still small. They kept me hospitalized and I didnt see my Dr. The residents came in and wanted to put me on mag sulfate and labetol..I told them I needed a few minutes to make calls to my husband and family to see if it was safe. They came in telling me I had 30% chance of dying, I annoyed them and asked 10 times if this is safe for my baby. They said yes. I did not have eclampsia and my bp was stabilized. The highest that it ever went up to was 180/110 but then it went down to 130/100 and then 120/97 and then back up. I was injected steroids for the babys lungs to develop just in case. I saw my Dr for 5 minutes the next day and he said I would probably have to deliver soon. I asked him how this happened-didnt he see signs and he replied that this developed overnight and disappeared. The NST showed that my baby was active however, i was not allowed to eat or drink ever since i got admitted to the hospital. I was so thirsty!! The next day on 11/18 I had an ultrasound done at 6 pm and the Dr said that he would tell my dr to keep me hospitalized and not to deliver but to repeat the ultrasound in 3 hrs. Some Dr. came to my room 4 hrs later with a resident to do a bedside ultrasound. I saw by his face that something was wrong. I asked him whats wrong and he replied tat my baby isnt moving. I tried to stay positive like i usually am and simply replied well if u feed and give us something to drink then my baby will move. This happened before on some of my ultrasounds where my baby fell asleep and very active later. I said this very politely and he snapped at me and said this is not a joke "your baby is dying." He said its time for an emergency c-section and they phoned my DR. Horrible bedside manner because I started to shake. I thought my heart was going to fly out of my chest. I was so scared and didnt even think to argue with this DR even though, I should have ripped my IVs off and walked out of this hospital ASAP to another hospital. My Dr came didnt even check the ultrasound or the NST but decided to deliver me. My baby Mia was born 11/18/10, weighing 1 lb 13 oz small but great apgar scores of 6 and 8 and crying immediately. It was the happiest day of my life!! She was in the NICU for 26 days do great..I was there everyday. I was producing so much breastmilk. She had no complcations(no brain bleeds, no heart complications, etc which are normal for preemies). She was gaining weight. I held her-she even smiled and looked at me. All the nurses said she was so feisty and strong. She looked like her Daddy but had her Mommys personality..she even slept like me!! She was breathing room air on her own with minimal support of CPAP. Her 2 headscans came back normal..everything was great. She had several refluxes and aspirates but we were told this was normal and not to worry. The day before my precious angel died, there was a nurse that I met for the first time..something was off, I didnt like her and i was trying to get primrary care nurses to take care of my baby instead of them switching nurses everyday. I was told that it was hospital policy not to assign primarary care. I was still waiting to speak to the main supervisor that was out for a few days. (My husband and I tried to be super nice with the NICU..we would come religiously and I would call all hours of the night to check up on my baby if I wasnt there, but we were nice because we knew they were taking care of our most precious gift of life-our baby.) I thought I could trust these drs too! That day the new attending DR in the NICU told me Mia was doing great. That evening right after the nurses shift that I wasnt too fond of, she developed blood in her stools. We were questioning the Drs since my husband and I were doing a lot or reading and research about preemies. There was a resident Dr that evening that told us not to worry. Its very strange how there was no attending Dr to speak with us. We were scared that Mia had NEC but that DR told us not to worry and to get some sleep that she didnt have NEC and that they would contact us. The next morning, we went to the hospital. While we were driving, a nurse pract. called to say that Mia wasnt doing well. We drove like maniacs..got to the hospital in 12 minutes in rush hour when it usually takes 30 min without traffic. I almost fainted when i saw Mia...she was hooked onto a ventilator, with a swollen distended abdomen, her litlle hands were blue, lethargic and looked like she had internal bleeding. My husband had to catch me from fainting. We were consulted with the attending Dr and the pediatric surgeon. They advised us for the surgeon to do a drainage they were unsure if it was sepsis or NEC but said that a little perforation would be the best option to get the air out of her tummy and it would only benefit my daughter. We allowed this..we had no other choice. The surgeon came out and said Mia handled the perforation fine and hopefully it would help her and left. My precious baby died in my arms with internal and external bleeding, suffering from NEC and a cardiopulmonary arrest. My mom had to watch her baby holding her dying baby in her arms...she was crying hysterically, my husband was..the nurses in the room were..even the Dr held back his tears. My favorite nurse said she has never seen anything like this in all of 9 years that she worked in ******. She was the nurse who actually took care of my baby until 7 am on 12/13 and then the "bad" nurse came on shift. My fav nurse told me that when her shift ended Mia was very healthy. This was the worst day of my life 12/14/10 and I am depressed...I dont want to live without my daughter Mia. I went from being a happy, positive, strong woman always wanting to help others to wanting to commit sucide. We got the medical records which was extremely hard because the NICU was delaying them for as long as possible. I have researched the records, practically memorized them. The nurse that i didnt like according to the records, fed my baby human milk and formula and rigt after her shift is when my baby got sick and passed away. I blame myself everyday for choosing my OBgyn. I was told by another Dr who is now reviewing my records that I should have not been delievered and why didnt my Dr reconfirm the other Dr's decision that Mia's fetal heart rate was fine and that she was not in distress. I blame myself and always will that I chose my OBGYN, drove myself to *****...as soon as I walked thru those doors I walked thru * for the rest of my life. Why didnt I argue against the c-section??? Why did this have to happen to MIa when she was doing so great for almost a month?? Was there no way of maintaing my pre-eclampsia?? Is preeclampsia and NEC related??? Did my body kill my baby??I am sorry for such a long story but I feel like im trapped, lost, and helpless.

[blythe]

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 (http://emedicine.medscape.com/article/796690-overview):
* 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:
http://www.newyorker.com/archive/2006/0 ... 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.

[kerisue]

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.

[jean]

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.

[trish9]

Jackie,
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.

[brandib]

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*

[uncskristy]

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

[miamibunnie]

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!!!!

[m]

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.

[cmccaffrey]

Jackie,
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.