Missing Molly

[MissingMolly]

Hi, I am new to these forums, having recently lost my daughter between 23 and 24 weeks due to HELLP syndrome. I'm glad I found this forum, but I'm very sorry we all have to be here in the place of grief and am so sorry for everyone's losses.

Molly's story: My husband and I found out we were pregnant on Father's Day, and it was very joyful. I'd had a previous miscarriage, so I was a little nervous from the beginning but felt slightly reassured as the pregnancy got farther along. However, I always felt there was something "not quite right." I kept asking my doctor if we could check my placental function. I was basically blown off. I was feeling so terrible throughout the pregnancy that at one point, in tears, I told the nurse practitioner that I thought the pregnancy might kill me. She probably thought I was being a melodramatic, worry wart pregnant lady. I also asked my husband if he knew what to do if someone has a seizure (meaning me). Obviously, my intuition that something wasn't right was spot-on, but everyone kept telling me not to worry, everything was fine, "if you get up and move around, you'll feel better," "the sicker you are, the healthier the baby will be." Looking back now, it's amazing to me that I was the only one who just knew that something was very, very wrong.

I had severe nausea and vomiting from about 7 weeks until 17, and then had to go to the ER at 18 weeks due to high blood pressure, chest pain, and shortness of breath. My potassium and sodium were both low--I had to ask to be replaced for the potassium, and they didn't tell me about the sodium. I only found that out a few days later from my primary doctor. Because I was having chest pain, they did a stress echocardiogram and when everything there came back fine, they sent me home telling me that I'd probably eventually have to go on blood pressure medication. I discussed that with my OB and was told that they didn't like to start medication until my blood pressure was consistently higher than 150/90. Also, one of my thyroid tests indicated hyperthyroidism, but since my free T4 was normal my doctors weren't very concerned. I was, though.

I was on modified bed rest, but then my doctor and the nurse practitioner both expressed concern about me being too sedentary because they didn't want me to get blood clots. So I tried to get up and move around. But most of the time when I'd get up for more than 5 or 10 minutes, my blood pressure would start to go back up and I'd feel short of breath.

On Friday, Oct 28, I started feeling really ill. When I checked my blood pressure, it was 168/123 and I went into see my OB. They prescribed medication for me but my blood pressure remained high after taking it, and I also vomited and developed severe upper abdominal pain that radiated to my back and right shoulder. After calling the on-call doc, I went into the ER, got sent up to L&D and everything happened very fast after that. They did tests to rule out GI issues, but I was told within a few hours of being admitted that they believed I had developed HELLP syndrome. My platelets were getting lower and lower and my liver enzymes were shooting through the roof. I was told by my OB and a perinatologist that my condition was deteriorating so rapidly that they would need to deliver the baby within a few hours or I would likely die. And the neonatologist told me very firmly and coldly that there was absolutely nothing they could do for the baby since she was only 23 weeks--just short of the "age of viability"-- and would be too small for their equipment.

I was also told that I was going downhill so fast that inducing me wasn't an option and I would instead have to have a c-section. To top it off, because my platelet level was dropping so quickly, they wouldn't be able to give me a spinal--I would be getting general anesthesia. And so, they gave me a drug called Versed, which causes amnesia. To add to my heartbreak, I don't remember that first hour or so with my precious newborn daughter. In the afternoon of October 29, my daughter was born alive, weighing 1 pound and measuring 11 inches. She was beautiful, petite, and perfect and looked a lot like her daddy. She lived for almost 2 hours and died in my arms, where she stayed until the next day when I finally surrendered her. If there had been any way to save her, I can say with absolute certainty that I would have risked my life to do so.

I'm beyond sad and devastated, and I don't understand why this had to happen. I wish I could have my baby back so much. I look at her pictures every day, and the pain of loss is excruciating. We named her Molly Meriki.

I feel a lot of guilt because I feel like my body failed my baby. My doctor will be testing me for autoimmune and clotting disorders, but at this point it's difficult to even contemplate trying to get pregnant again. I just want my sweet baby Molly back.

Molly was cremated yesterday, and my husband and I just chose an urn for our little girl's ashes. I'm so heartbroken.

[Shannonlynn]

Hello! I am sorry about your losing Molly. Sorry you had to find the forum but it's a good place to find some peace. Your experience is similar to mine. I lost my son, Fritzy, on May 6th at 24 weeks. I felt the same way you did-things never felt quite right. I had a lot of scary things happen leading up to the severe PE delivery, but they always sort of worked themselves out, until the day I had to deliver. You shouldn't feel bad about the fact that no one took you seriously, I am pretty sure there are many of us on the boards that have felt exactly the same way you did.

It's good that you are being tested for underlying disorders. I was tested in July and didn't really expect to have anything going on but I have antiphospholipid antigen syndrome. I was shocked but the perinatologist said that is somewhat encouraging because it is a possible reason for the placenta failing. So, in time, my husband and I will try again and pray for the best possible outcome.

Again, I am very sorry for your loss and I know the universe will give your family the strength to recover. We move on we just never forget. ((HUGS)) Shannon

[kerisue]

I'm so, so sorry that Molly is gone. I lost my daughter too and felt the same way as you- devastated and like my body had failed me- and that I had failed my daughter. I too would have done anything- including give my life- to allow her the chance to live. My doctors assured me as I'm sure yours did too that I couldn't have done anything to prevent this. If you ever feel up to sharing pictures of Molly I'd love to see her.

[MissingMolly]

Thank you for responding, Shannon and Kerisue, and for your kind words. I'm sorry for your losses as well.

(I figured out how to add a photo, but the file is too big. So as soon as I figure out how to fix that I'll try again.)

I've been tested for a few things already--an ANA panel was done--but those have come back negative. I haven't been tested for antiphospholipid syndrome, or had any anticoagulant studies yet. My OB wants to wait until after the postpartum period to do further testing, but I'm wondering if something will show up now that won't show up on any "baseline" studies....?

I'm just so upset because I keep wondering if this could have been prevented. It adds to the grief of losing my baby. What if I had been put on blood pressure medication earlier (instead, I was only started on methyldopa the day I went into full-blown HELLP)? What if I had been put on strict bedrest instead of encouraged to get up? What if I hadn't had that salty meal the day before? What if, what if, what if.

I just wish I could have my baby back.

[MissingMolly]

These pictures were taken of Molly just after she was born--she was still alive.

[susheli]

She was so beautiful. Thank you for sharing these pictures with us. I'm so sorry that this disease has taken her from you. I am glad you found these forums - they have been a lifeline for many of us who went through severe PE and HELLP. I read your post filled with love and longing and didn't want to not reply. LIke many of us who came close to your loss and know that, I care and reach out to you. This disease makes so little sense, and we still have so few answers. Whether we have lost our precious babies or had to watch them suffer in NICU units, we ask the questions you ask, over and over. Why did my body fail my child? What could have been done differently? I know from speaking with many doctors that once the condition is established very early in pregnancy before we know it, nothing can be done to alter its course but all you did do, which is seek medical help. Doctors hate early onset preeclampsia especially because they too feel so helpless faced with trying to treat patients with so little available to save lives. Our hope is that there are many who are fighting for a cure in the memory of the lives lost like your sweet Molly's. I recently attended the Preeclampsia Foundation's yearly gala event and was deeply moved by sitting at the table with three researchers who have devoted their lives to trying to understand and overcome this disease. I know this won't and can't ease your pain, but wanted to express something that meant a lot to me as I dealt with the aftermath of preeclampsia: you are not alone and this is a place where many understand the long, slow journey to recovery. Come here as often as you need to.
Warmly,
Susannah

[kerisue]

Thank you for sharing the pics of Molly. She is so beautiful, infinitely precious.

[flori]

Your beautiful Molly brought tears to my eyes. Thank you for sharing her pictures with us.

[shiladae]

She's beautiful... She remind me of my daughter. Nur is 27 weeks when she left us due to severe pre eclampsia.
Agree with Susannah. You are not alone and this is a place where many understand the long, slow journey to recovery.
It’s already 28 days she left us. But she always here in our heart. You take care dear….
Love, Shila

[cmccaffrey]

I just wanted to tell you how sorry I am for your loss and that your daughter was just gorgeous. We are 14 months out from losing our baby boy and I still feel guilty every single day. I know that I couldn't have done anything differently and that I had no control over my body, but that still doesn't make me feel less responsible. Just more frustrated that I am one of those women who has trouble doing what comes natural to our gender. It gets a little easier after a while. I don't cry as much as I used to (or at least on the outside or in public). The pain of losing your sweet Molly will never leave you, it will just make your life and the way you live your life different.

I hope you find some answers and peace in all that testing. *HUGS and Prayers*
-Christa