Mom to Brielle Grace
October 2, 2015
My husband and I were so excited, when I say excited, I mean literally over the moon! We are high school sweet hearts, we had traveled & had adventures, but something was definitely missing! That’s why when we found out I was pregnant on May 18th of 2015, we couldn’t have been happier. We had just started to see a fertility specialist because of a uterine abnormality (unicornuate uterus) and were surprised/thrilled/ecstatic really to be finally pregnant! We thought the hard part was over.
My pregnancy was very normal. I had the nausea on and off for the first trimester, didn’t gain much weight and continued working. I really ate well and got a ton of sleep (on my left side as much as possible!). Our baby was beautiful in every ultrasound- the heartbeat was always strong & I could have stared at the baby’s sweet profile all day! We had plenty of ultrasounds up to that point, I was considered high-risk for later in pregnancy (3rd trimester) when baby can’t grow much more because of the uterine abnormality. We were so relieved everything looked great & was going well. I was feeling so good in fact; we planned a trip to NYC to do some sightseeing around week 13 or so. I had some minor spotting a few days later & rushed to the ER in a panic- but all looked fine & I was told I had a very small subchorionic hemorrhage and that sometimes it can cause minor spotting. I had also recently gone off of crinone suppositories and was told mild spotting could also be from no longer using the progesterone supplements. Either way, I took it VERY easy for a few days and rested nonstop. Everything continued on like normal.
My husband & I went to the Vineyard (like we do every summer). We swam and relaxed, ate great food & day dreamed about what life would be like after our sweet bundle of joy came home. I’ve never been happier or felt more beautiful, I was starting to get a bump and was so excited!
Around week 16/17 my blood work came back very “off”. This hadn’t happened in the first trimester and my OBGYN’s office was concerned. They cancelled my 18 week appointment and sent me to an MFM at Hartford Hospital. Before we actually had an ultrasound- the genetic counselor sat us down and very matter of factory told us that the baby had most likely already passed since I had extremely abnormal amounts of protein in my blood work. How could this be?!? We had just seen the baby on ultrasound last week?! The counselor explained that IF the baby was alive, it would most likely have severe neural tube defects/ chromosomal issues. When I say literally my world stopped when she told us our sweet baby was most likely dead- I mean it stopped. It felt like someone had punched me in the gut- I couldn’t breathe, I started to sweat & shake, I couldn’t imagine not having the sweet bee inside of me make it , I wanted this baby so badly, needed it for so many reasons! We found out at the appointment (after they literally said the baby was most likely dead) that she looked perfect, found out it was a girl (!!!!!!) and I started planning all over again. No neural tube defects could be found, they measured every organ, fold, looked at the bone in her nose & in her pinky fingers, she looked perfect. She was sucking her thumb, doing the wave, you name it! She surprised them because she appeared so normal and healthy.
The doctors then recommended an amino based on my “off” blood work, maybe they were missing something? They also casually mentioned it could be a placenta issue, which would mean she wasn’t growing correctly, but at that point she was measuring within 7 days so they were not concerned as much as finding out what was “wrong” with her. Her fluid also looked great & she appeared very healthy. I declined the amino, we wouldn’t do anything about it anyway and instead opted for a cell free DNA blood test. Much less invasive and no chance in harming her or causing my water to break. We left after the blood test, we were told we were not out of the woods and they would see me again in two weeks to measure her again. We left so relieved! I have never prayed more or asked more people to pray for us. I knew she would be ok!! I NEVER once really thought she wouldn’t be here. We thought she might be early & small based on the blood work numbers, but we knew we would have her. I looked forward to planning her nursery, choosing paint colors and looking into venues for her shower. We decided on the name “Brielle” because it meant ‘God is my strength’. We knew she would fight & prove the doctors wrong!
About a week later, we got the DNA test results back from Counsyl and they were negative for any of the more popular genetic disorders. I literally broke down when I got those test results. I had had a dream the night before – all was going to be fine with the results and it was just amazing to get the email that morning, pull up the results and to have everything ok. Just felt like a weight was lifted! I had had such difficulty eating & sleeping, literally ran to the bathroom so often because my stomach was in such knots and was happy to put that behind us. Again, we were reassured that she would be fine, just perhaps a little small.
I was seeing my regular OBGYN every other week & seeing MFM every other week, so we were being seen every week. At first I loved this, but after our second ultrasound with MFM around 20 weeks, we got more bad news. Brielle hadn’t grown much, the placenta looked “off” and was globular in appearance. It wasn’t pancake shaped and had large placenta lakes. We were crushed all over again, why wasn’t she growing?! How could this be?! So many of our questions weren’t answered. They didn’t know exactly what was happening because they didn’t have the placenta- we were told extensive tests could & would be done on it once it was delivered (whenever that might be)
My husband & I decided to travel to Boston to get a second opinion. We saw a specialist who told us it wasn’t looking good after looking at the ultrasound. He also explained that there wasn’t much fluid around her. He reassured us “not to worry, this wouldn’t happen with the next pregnancy.” I literally almost threw up all over his desk, I couldn’t stop crying, it was a long, devastating day. He asked us about my health, did I have high blood pressure? No, never. Did I have a clotting disorder, Factor V Leiden, HTMFR, Lupus, sugar diabetes? No, no, no & no. I was healthy, had no clotting disorders or anything else wrong with me (as far as I knew) The specialist encouraged me to start taking a baby aspirin, eating as much protein as possible and drinking as much water as possible. I asked him about bed rest? He told me it wouldn’t do anything. He said she would most likely pass away in utero. We left deflated & scared, so sad that there was no magical answer or anything we could do that was “proven to work” A bad placenta, bad luck- simple as that. I couldn’t stop thinking that we would prove them wrong. I know it sounds crazy, but I STILL didn’t believe we wouldn’t have her. I knew she would be okay!
I again had my third MFM appointment; I was around 21 weeks at this point. We again, got terrible news. She wasn’t moving a lot, didn’t have much fluid and wasn’t growing. I had been SO sure she had!! I had started taking a baby aspirin and also was eating a ton of protein and drinking as much as possible. I just couldn’t and wouldn’t accept that she wasn’t going to be here. So many people were praying for her and willing her to live. Plus, I was 21 weeks and WHO loses a baby that far along?!?!? No one!! It’s unheard of!! I BEGGED the doctor to write me a doctor’s note for bed rest- I insisted! I knew it would work & had read of IUGR babies growing after the mom had rested more. I was a kindergarten teacher and knew I wouldn’t be able to “rest” during the day. The MFM doctor did write me a note and told me that until Brielle got to 450/500 grams there was nothing they could do for her. They wouldn’t even give me steroids to mature her lungs at that point because “they didn’t have equipment small enough to work on a 250/300 gram baby.” Again the MFM Doctor assured us a complete pathology report would be done on the placenta to determine what actually happened/ went wrong.
The long, sad and scary days passed. I felt so helpless. I had a lot of tearful long days by myself at home and wanted to stop feeling so worried. I also noticed I wasn’t feeling like “myself” anymore. My feet had swelled, my hands were fluid filled and I just felt gross. I remember having a friend come to see me around week 23 and I couldn’t even concentrate on what she was saying. I could hear her and knew what she was saying, but I couldn’t make sense of the words coming out of her mouth . I kept asking her to repeat herself & I just kept smiling and nodding because for the life of me I couldn’t concentrate on what she was talking about. I also noticed I was having difficulty lying down, it hurt and I felt like something was crushing me, I had this stabbing pain by my heart…..also noticed I was SO out of breath. I mean showering and walking down the stairs was exhausting, literally thinking about it now they are such easy things to do, but at the time it felt like running a marathon. I didn’t think there was anything “wrong” with me just that I was pregnant. After all, I had just gone to my OBGYN on Monday who had checked my urine and blood pressure and things were fine. It was Wednesday, I couldn’t be sick or anything so soon after being “fine”. Thursday came and my parents came over to visit. I remember feeling even worse & not knowing what was wrong with me- just feeling this dread, I literally felt like the world was ending. I remember sitting down on the couch- (really just wanting to curl up in a ball) but I couldn’t because my dad sat next to me and I had to sit upright & I remember feeling like I was going to start sobbing- the thought of not lying down was overwhelming…..I just wanted to lay down, I remember getting teary eyed and yelling at myself (in my head) to stop it this instant after all, I was laying down all day and I could share after all, couldn’t I?!? I felt so terrible for wanting to ask my dad to move so I could lie down. My mom noticed I didn’t look/seem right and asked if I felt OK? I lied and said I was just tired. She asked me when the last time I had went to the doctor’s office was, I told her Monday (it was Thursday at this point) She told me to call my doctor in the morning if I didn’t feel better.
That night was terrible. I didn’t feel great and the pain by my heart got worse. I couldn’t find a comfortable position, lying on my left side for 20 hours a day was starting to wreak havoc on my back! My head was also throbbing and I couldn’t stomach anything, I wasn’t eating a lot and I felt terrible that I didn’t have an appetite to help her grow, I thought I was failing her. I also noticed I was drinking a lot but not going to the bathroom much at all. I ended up drifting off to sleep and having a terrible dream about Brielle that night. I woke up in a panic knowing something was wrong but couldn’t put my finger on it. I had this overwhelming sense of dread and thought she had died. I called my OBGYN office in the am and they agreed to see me first thing. I arrived, left a urine sample and had my blood pressure checked….once like always & then again & again. The nurse left, came back in with another cuff and took it again. I became irritated because all I wanted was a heartbeat check, didn’t she know I was here for that!?!? WHY WAS SHE WASTING TIME ON ME?!? I became upset because I wanted to know Brielle was ok and I asked the nurse if everything was OK?!? The nurse barely looked at me and told me to lie down on my left side and “the doctor would be in to talk to me.” I started crying even more because I knew something wasn’t right at that point, this had never happened before! The nurses always told me my blood pressure was “perfect.”
The doctor came in shortly after, explained that my blood pressure was high and they were waiting for my urine analysis to be done. I told her I was fine and wanted a heartbeat check. She took out her fetal monitor and was able to find Brielle’s heartbeat easily and again, it was like this huge weight was lifted off my shoulders. She was OK!!!! The doctor left and came back in shortly after and told me my urine had +2 protein in it. I didn’t really know what this meant exactly and she explained it wasn’t good & that I would need to go to the ER, she would call labor & delivery and they would monitor me. Thank god my husband was there with me. We left thinking we would go to the ER and they would monitor me for an hour or so and send me on my way. We thought we would be back home in a few hours. The doctor explained she would call the ER to let them know we were coming.
Fast forward an hour, we get to labor and delivery, the nurse quickly rushes me in a room. She and another nurse explain that they are going to start an IV in me. They needed blood and urine tests. So many blood tests, I lost track. I was feeling a little “off” there but not like I was dying or anything. My husband and I had actually stopped for a quick lunch because I was hungry before going to the ER, this was how foolish and unaware we were. I feel like I have aged 20 years since this day.
Shortly after we arrived, two doctors came in. A doctor from the MFM group I was going to (who I hadn’t met yet) and another doctor from my OBGYN office (whom I also hadn’t met yet). They very matter of fact (but with compassion) told me I had preeclampsia, it was getting worse and the only way to stop the disease from getting worse was to deliver the baby & placenta. WHAT?!? My heart literally broke in half that second- I thought I hadn’t heard them correctly. Didn’t they know I was only 23 weeks and 2 days?!? I couldn’t deliver now & have her live?!? They explained to me calmly that Brielle would not live and the placenta was making us both very sick. They told me they needed to get her out of me as quickly as possible, that all my blood tests & blood pressure kept rising and I was in the “severe preeclampsia” category now. I didn’t have many options they said. The quickest, easiest and safest way was for me to have a D & E . I wasn’t exactly sure what this was but knew it was some form of killing the baby & I just broke down and sobbed- all the weeks of worry, angst and anxiety just released. It was clear I wouldn’t have her. I still couldn’t accept this, I wasn’t ready to say goodbye to her or all the hopes & dreams I had for her.
I begged for a C-section and the doctor told me absolutely no, that a section was too risky and only done for a baby if it was viable and that our baby was “nowhere near viable.” The doctor told me there wasn’t a doctor in the hospital that would do one for me. I was too sick and they didn’t want to increase my chances of a uterine tear or a scar for my next pregnancy. They told me to have her naturally; there was a great chance of seizure, stroke and a continued decline with my kidneys. I didn’t know what to do. I asked about an ultrasound, how did they know she wasn’t big enough?!? The doctor told me she was positive she hadn’t grown enough to I be viable- but I (again!!) didn’t believe her and begged for one to make sure. It was so hard to see her on that last ultrasound. I don’t remember her moving a lot- there was next to no fluid and she was so still. I hate to think of her like that, I like to remember her around week 14 when she was so active and was moving all around. Sucking her thumb, playing with her toes. The doctor was right, she hadn’t grown at all. I was 23 weeks 2 days and she was measuring the size of an 18 week old baby. Again, her heartbeat was strong though- that’s what kills me…..I killed her. I gave them the okay to end her life because she wasn’t “viable”.
The doctors explained they needed to dilate my cervix and insert luminera to make sure no damage was done during the operation. I needed to get on magnesium ASAP and would be on it for at least 12 hours. I also would later find out that I needed to be on it longer, I wouldn’t be leaving the next day (like they had told me) but would get sicker before I got any better. I would also need oxygen, to be incubated and would go home on high blood pressure meds because I had gotten to severe preeclampsia and had lasting complications 6 weeks after.
The night was one nightmare after another. I remember telling myself to just get up and leave but I couldn’t. My parents rushed to the hospital to see me and my twin brother (who is a cop and was on duty in the same city as the hospital). They couldn’t believe what was happening. They felt so terrible to see me in so much agony, not physical pain but emotional turmoil. I was a crying/sobbing mess. I couldn’t fathom what I had to do, yet knew it needed to be done to save my life.
We were told a special surgeon would have to be called to perform the surgery. They were risky and there were not many doctors who were qualified enough to do them. After the surgery is all a blur, the next few weeks after was a blur. It has been almost 3 months since that dreaded day. October 2, 2015 will always be one of the cruelest days in my memory. I lost my sweet girl, my angel Brielle Grace. My future, my reason for living. Nothing seems to matter anymore. Life is cruel and seems so pointless. I think of Brielle every minute and hate myself for not being able to grow her and nurture her the way a mother should. You never think you’re going to be 30 and having to buy a burial plot for your daughter and ones for yourselves too, since you want to be buried next to her. We bought her this beautiful headstone, a baby lamb with flowers surrounding it. I go there all the time with my husband to light her candle which will always burn bright. I wish I was finishing her nursery and getting her bassinet ready. Instead, I’m seeing specialists, having blood test after blood test and being referred to different doctors for different tests/procedures done to see what actually happened. We also found out the surgeon who performed the surgery didn’t make a requisition for the placenta (even though that was the plan all along) so we may never know what actually happened. I have tested negative for all the blood clotting disorders, my sugar/cholesterol/thyroid/lupus/ etc are all negative/fine.
Life is just so cruel. I miss my sweet girl all the time. I have so much guilt about not having enough strength or courage to have her naturally. I hope I see her sooner than later and can wrap my empty arms around her and cradle her and tell her how much I love her. I feel like God may never let me see her because I chose to end her life. I need her to know how much we love her, how sorry I am and will always be.