Mom to Miles John

September 13, 2012 – September 17, 2012

Grand Rapids, Michigan

My husband and I decided to start a family in January of 2011. I promptly went off the pill and hoped that I would get pregnant quickly. It took about a year for me to finally get a positive reading, and 4 short weeks after that happened, I found out I was having a miscarriage. That was January 2012. Things weren’t progressing on their own, so I had a D&C on January 11, 2012. I was devastated and convinced the only thing that would take away the pain was getting pregnant again as soon as possible. So, in April, when we could try again, my husband and I went to Europe on vacation and the day we returned home I took another test and found out I was pregnant for the second time.

This pregnancy was difficult from the start. Within days of finding out I was pregnant, I also came down with bronchitis. While still recovering from that illness, I started having all-day sickness. At just over 6 weeks I started bleeding and of course assumed I was having another miscarriage. I will never forget how excited and hopeful my husband, Jason, and I were after seeing our son’s heartbeat on that very first ultrasound. I was sent home, stopped bleeding and spent 6 more weeks feeling nauseous every day all day, and throwing up most mornings.

At around 12 weeks I came down with a miserable high-fever flu that lasted 2 weeks. The first week after throwing up absolutely everything I tried to put in my body, I finally went to the ER, where they gave me an IV to re-hydrate me, but also couldn’t find the heartbeat on the doppler…so I was sent back to my OBGYN the next day for another ultrasound. Again, we were so relieved to see our sweet baby’s heartbeat on the ultrasound. The second week of the flu when the fever finally went away was spent trying to get some food into my system because I was literally too weak to walk to the bathroom in my house. It was awful. When I finally recovered from that, I just went back to my all day sickness, which lasted until about 19 weeks.

From 19-21 weeks I felt good, the best I had felt in forever. I remember starving and eating non-stop (I had lost 7 lbs so far in the pregnancy) and generally being so happy for finally being over the sickness!

Then I hit 23 weeks. On Monday evening, during prenatal yoga, I developed a throbbing, miserable headache. I went home and right to bed, but couldn’t sleep at all. Finally, at 1 am, I called the doctor. Assuming it was a migraine, she called in a prescription for Tylenol with codeine to an all-night pharmacy. It didn’t do anything. The next day, with my head still throbbing, I called the doctor again – their suggestions were to drink caffeine, try to sleep and take the Tylenol with codeine every 4 hours. I also went and had acupuncture. While the needles were in me, I felt great. But, as soon as they came out, the headache came back. It did finally go away by the time I went to bed on Tuesday night.

Wednesday and Thursday, I felt fine. Then at 2 pm on Thursday, I had a routine doctor appointment. The nurse talked to me for awhile and then took my blood pressure. I could tell something was wrong. She had me give a urine sample and then had me lay down in the exam room, but she mentioned being concerned that I had preeclampsia. So, while laying on the table, I Googled it…and was terrified. The doctor finally came in, and without any small talk, told me I had to go straight to the hospital. A nurse was on her way with wheelchair to wheel me over there (it’s across the street from my office).

At the hospital, they told me my blood pressure was 200/113 and that I had severe preeclampsia and they were going to take labs continuously to see if I had HELLP syndrome as well. They put pads on my hospital bed (in case I had a seizure) and continuously told me over and over again how sick I was, that I had to relax because otherwise I could have a seizure or a stroke, and that I wouldn’t be leaving the hospital before delivering my son. When my labs came back, it turned out I had HELLP syndrome – which means that my kidneys were leaking, my liver wasn’t functioning and my blood platelets were low. I was terrified. At first, my doctor hoped I could make it 48 hours. Then that changed to 12. After only 4 hours in the hospital, my doctor came in and told me that they had to deliver within the next hour or I would die. My blood pressure was still too high to have a spinal, so they had to use a general anesthesia and I was out for the entire procedure, while my poor husband sat alone in the hallway outside the OR.

When I woke up, I was told they had delivered a tiny 1 lb. 3 oz., 11″ baby boy. My husband had already seen him in the NICU and he showed me pictures. I wasn’t able to see him until the 3rd day. Miles John, our son, was doing well that first day. I spent two more days not being allowed to visit my son, having terrifying hallucinations from the magnesium sulfate, and needing oxygen just to breathe. Finally, on the 3rd day, I got to visit him, on a gurney. It was tough. I was lightheaded, uncomfortable, and my poor son was just so, so small. I saw him again twice the next day – the first day I was allowed to shower and get out of my bed. Then, as I was getting ready to go to the NICU on his 4th day of life, his doctor came in to tell us that he had a grade 3 brain hemorrhage and basically had no brain function whatsoever. My husband and I held our sweet son while he passed. It was heartbreaking.

I was released from the hospital the next day on 9 blood pressure pills daily, Xanax and a million other things. My blood pressure has finally gone back to normal, but my life is nowhere near normal at this point. I want my son back. I want this to have never happened.

In addition, we have no idea where we stand on getting pregnant in the future. I’ve had mixed results from the OB’s at my office and am being sent to a high-risk. However, I know that I will never be told this definitely won’t happen again, and to be perfectly honest, I’m terrified of living through that experience again, and even more scared of losing another baby.

You can contact Robin at

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  1. im so sorry!! i lost my twin boys at 21 weeks, be strong for your little boy , he doesnt want mommy sad!

  2. Robin, how incredibly brave of you to share your story. I know your friend Shannon through the internet, and I was fighting for you and your little Miles John as soon as I heard what was going on.

    I’m so sorry for your family’s loss. I can’t imagine what it’s like, but I can hope and pray that you never have to experience that again

  3. You are so brave, my friend, and you’ll get through this. So much love to you and Jason.

  4. Thank you so much for sharing your story. I really appreciate it.

  5. Your story breaks my heart. I am so sorry that you went through this. I hope you have a healthy baby one day.

  6. I am so so sorry for your loss.

  7. Robin, I am so sorry for your loss. A dear friend of mine lost her baby in May. It is an awful experience to go through. I am very sorry that you have to experience it too.

  8. I can not imagine your pain, but I can relate as I too lost a baby to HELLP syndrome. I was 21weeks and my story is much like yours. I just want you to know you are not alone as much as you feel that you are. Hug!!!!

  9. I feel for your pain and loss. I was diagnosed with HELLP at 28 weeks. We were able to get about 48hrs before I had to deliver. Our baby boy was 2lbs 2 oz and 13.5 inches. He was healthy and had a great outlook since he was 28weeks. He was strong and amazing. Unfortunately after 25 amazing days he suddenly and surprising passed away due to a perforated bowel from necrotizing enterocolitis caused by his premature tummy. He passed just 3weeks ago.

    • I’m so sorry to hear that Clara, how awful! Especially after being so hopeful that he would live. This breaks my heart all over again, and I wish for a healthy baby for you someday.

  10. It is terrifying to think of trying to have another child since there are no guarantees we won’t get this again

    • On that note, after having tons of testing done and finding the most amazing high-risk OB, I successfully gave birth to a healthy baby boy in September of 2013. I had to do daily shots of Lovenox, and then Heparin, I was on blood pressure medication the whole time (though my bp never did go up), had biweekly appointments from the start, then weekly after 20 weeks and ultrasounds every 4 weeks. It can be done my friend!

  11. My heart goes out to you. I also lost a baby at 21 weeks due to severe HELLP. You are not alone.

  12. I’m so glad that you were able to know and hold Miles John, even if it was only for days and not the decades you expected. I believe you will come to treasure those moments, even if they seem like torture right now. Please accept my condolences and my very warm wishes for a happy healthy pregnancy in your future.

  13. Kristan says:

    I delivered my daughter at 24 weeks and she too had a brain hemorrhage that would leave her with no brain function. We let her go on her third day. My doctors cant tell me what triggered the early labor. maybe a placental abruption, maybe an incompetent cervix, they just dont seem to know. i am also struggling with whether or not we will have another baby. I am scared of losing another baby. I totally understand what you are feeling. I have found a new term that I am holding on to, rainbow baby. The baby you have after the heartbreak of all this. I have hope that one day I will have my rainbow baby.

    • Oh Kristan, I hope for that for you as well! I just had my rainbow baby a few months ago, and even though I still think of Miles every single day, there is definitely so much joy that comes with raising a rainbow. It truly does help the healing process along. I’m so sorry for the loss of your daughter.

  14. I’m sorry hon. I developed early onset Pre-e (22 weeks) with my firstborn, midwives ignored me for weeks on end, despite insanely high B/P, horrendous migraines, awful swelling, nonstop vomiting, ridiculous weight gain and me telling them what was wrong. My pregnancy with her ended in a LifeFlight and a C-Section at 33 Weeks on Friday June 18, 2004. She died on Tuesday February 1, 2005.

    • Your story is truly heartbreaking Shelly. It must be so upsetting that you knew something was going on and no one would listen. I’m so sorry for the loss of your daughter and wish you much happiness and a rainbow baby as well!

  15. My heart aches for you. I’m sending your heart and body healing thoughts. If you do decide to try again, just know you are not alone in your fear. And know that any child you are able to bring into your family — however you do it — will have the fiercest, most loving mother on Earth. I’m so sorry for your loss.

  16. Im so sorry for your loss. I lost my baby girl last week due to preeclampsia as well. She was born alive at 34 weeks… but 16 hours later she stopped breathing… apparently a lung aneurisma.
    I really hope that you and I can have healthy babies one day, I’ll keep praying for that. And I also hope that the pain gets better, I know even breathing takes all your efford.

  17. I feel for you. I had severe preeclampsia bordering on HELLP when I delivered my son at 24 weeks. He only lived 2 days and was just about the size of your son. My story is eerily similar to yours. Unfortunately, I still have reduced kidney function and swelling. I’ll pray for you as you grieve. Feel free to visit my blog to read about my story. Hugs!

  18. I can relate as I too had HELLP and lost my son at 24 weeks. My story is painfully similar to yours. You are not alone and pregnancy IS possible in the future. If you ever need anyone to talk to, i’m here.

  19. I lost my first at 22 weeks from hellp syndrome too in July 2012. I pulled my self up and conceived again in November 2012 and this time it was Mono Di twin girls. I carried them till May 2013 when they made 32 , 5 days I lost them again… It’s painful but in all God is good, keep trusting him and don’t give up.. One day you gonna have a sweet little child in your hands. The power of a supernatural childbirth is a good book i keep referring too as i go through this pain

  20. Thanks for sharing your story. My grandson Ezekiel was born September 13, 2013 and died September 17th, 2013. Same birth and death dates as your son so your story definitely caught my eye.

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