It began at the ol’ ob-gyn’s office where a urine and blood test confirmed my positive pregnancy test. We scheduled are next appointment for 10 weeks and we would be able to hear a heartbeat. At that appointment we did not hear a heartbeat, along with this the doctor and his staff were curt and cold. No one was telling us anything and we were sent for a sonogram. The sonogram showed no heartbeat and the baby only measured 8 weeks. The doctor then instructed me over the phone to go home and wait a week to see if I would miscarry on my own. That week was agony. When I finally called the doctors office to schedule the d&c the office worker was again rude and instead of asking me my information she then asked “so why do you need a d&c?” I started balling and told her I miscarried and was told to call. She then became really quiet, completely changed her tone, and apologized. I knew this was the last time I would be dealing with that office. When I went in for the procedure there was a different doctor who saw me and I was beyond grateful for that. The doctor informed us these things happen and are fairly common. I was still considered young at the time and they did not feel like I should be concerned with future pregnancies.
After such a disappointment we decided to wait a while to try again. I threw myself into work, took on 2 part-time jobs, and started consistently drinking too much. After about 6 months I finally saw a grief counselor who also has experience with substance abuse. I wanted to try and control things on my own, but my jobs were all centralized around spirits. I tried to scale back but it was not working. 6 months later I quit drinking completely, I left my two part-time jobs and my position was changed at my main job. Thankfully, people were understanding and my boss Kevin was amazingly helpful and inspiring. It was so difficult but necessary and I felt accomplished in doing so.
I was offered my dream job the day after we conceived my second baby. I had about 5 months of sobriety and was the healthiest I have ever been. I felt like things were falling into place. Sobriety- check, baby- check, job -check. It was all I ever wanted. I tried like hell to not stress about the pregnancy and threw myself into my job. We changed doctors and started at the Midwife Center. Those women were amazing. I had two appointments at 9 weeks and at 13 weeks we heard the heartbeat both times. I started feeling good and we started to tell our family and friends. Everyone was thrilled for us.
Our next appointment was 17 weeks and the day before Thanksgiving, the midwife could not find a heartbeat. We were sent for an emergency ultrasound that confirmed our nightmare. The baby only measured 13.5 weeks. I felt like the world was caving in. I couldn’t breath, couldn’t function. I quit my job and my life. We had to schedule another D&C unfortunately with the same doctor I had seen before and did not like. Apparently, very few doctors perform these in Pittsburgh and he is supposed to be “the best”. It was heart wrenching like before, but the office seemed much more professional and the doctor almost seemed to have a soul, unlike the first procedure.
We decided to be proactive and asked the doctor if he would test me and the baby for problems. He said he would test the babies chromosomes, but did not deem it necessary for me to be tested for anything saying since it was only my second miscarriage. I pushed further since he would not test me I asked if he could recommend a maternal fetal medicine specialist that would see me and he informed me they would probably not test me either and did not give me any information. I was again beside myself, pissed, and dumbfounded. I would never, ever deal with this man again.
I made an appointment to see the midwives a couple of weeks before Christmas. Again, they were very nice, but informed me I should just try to enjoy the holiday, wait until I got the baby’s chromosome test back, and relax. I appreciated the advice and kindness but I wanted answers. I called another doctors office and they told me they could not see me unless I was being referred. The holiday was a blur. Honestly, the only thing I can remember besides being sad was watching White Christmas multiple times with my sister.
My mom was on it though and started talking with her best friend Jan about my situation. Jan’s husband Dr. John Chan is my hero. He made an appoint to call me, talk to me about everything, and he apologized for the treatment I received from doctors he didn’t even know. He talked to his colleague, a MFM specialist in Johnstown Dr. Adib Khouzami, who referred a doctor in Pittsburgh that would see me. Finally, I was getting the help I was asking for. I was so grateful.
I called the doctor in Pittsburgh and spoke with his nurse practitioner who informed me they could set up an appointment to speak with me but they would not be able to test me since I only had two miscarriages. She then informed me that since I had no testing on the first fetus, if the second fetus came back to have a chromosomal abnormality that would be considered a cause of death. This meaning I would only have one unknown cause of death from my first miscarriage and they would only consider me having one miscarriage then. This is real people. I could not make this shit up if you paid me. My mind was blown and my heart was broken.
Dr. Chan heard the news of this and again called me and apologized. He asked with my permission if he could make an appointment for me with Dr. Khouzami in Johnstown. I was so happy I would have driven to Alaska for a doctor with a bit of humanity. My appointment was the very next week. Dr. Khouzami was so great. He answered all of our questions, apologized for the treatment of the office he recommended, called and got our chromosome results while we were with him (something I was told would be ready weeks earlier and had called every week to no avail, also the baby was a boy with no chromosomal abnormalities), gave us a prescription for blood tests, and hope. Josh and I left the appointment feeling positive. Dr. Khouzami was a Godsend and Dr. Chan was an angel.
By the end of January the testing came back with a couple of elevated immunoglobin levels, but nothing Dr. Khouzami was concerned with. He told us when we were ready to start trying again and as soon as I found out I was pregnant to take baby aspirin and give him a call. I found this renewed hope in everything. I went back to school. I started doing yoga and eating really healthy. I was still not drinking, which was a miracle in itself after all the shit and drama from the past few months. I prayed and tried to meditate. I was committed to bettering my mind, body and spirit. I felt good.
March I got a new job a chiropractors office. Dr. Alex Pattison and his wife are amazing. I told them about my previous troubles, how we were planning on trying again soon and they were supportive. I found out I was pregnant the beginning of April and I was due December 24. We were so excited and scared at the same time. We told a handful of people with the understanding that they would send out good thoughts. We decided we would continue care with Dr. Khouzami until about 20 weeks and then try to transfer to the midwives for more local care. Everything was going great. I had my first bout with morning sickness, something I did not have with the previous pregnancies, which I considered a good sign. I was feeling positive but still worried. I saw a Reiki healer and she gave me some mantras to say when I was feeling nervous, that helped a bit.
We had a sonogram at 18 weeks, Josh and I decided beforehand we did not want to find out the sex of the baby but have the ultimate surprise. He could not get off work so my mom came with me and she was so excited. The appointment started off normal. The sonograph tech was quiet but was still pointing things out to us right hand, left ear, yada yada. It was cool to see the baby move and wave. At the end she printed out some pictures for me to take home and asked me if I was sure about how far along I was? Red flag. Yeah, I was sure and the doctor was sure so what was the problem? The baby was measuring a week behind and she told us the doctor would be in to see us in a bit. We waited an hour and Dr. Khouzami came in a whirl wind. He gave me another sonogram and measure x, y, and z. He then started talking about a couple of abnormalities he was seeing on the screen single umbilical artery (there should be 2 arteries and 1 vein), lack of brain development, lack of separation between the left and right atrium, enlarged aorta and smaller pulmonary artery. He told me these could be markers of Trisomy 13, 18, or 21 and he wanted to do an amnio immediately. I was so overwhelmed with everything all I could do was cry. I agreed to it and talked to Josh. He said he was leaving work and he was so sorry he was not there with me. The amnio was weird it hurt a little but it was more of a challenge to hold back the tears and keep still. The doctor told me they would do a FISH test where we would get the results by Friday and a amniocentesis that would give us definitive results in 2 weeks. He told me he would let Dr. Chan know what was going on. He also gave me his cell phone number and told me if we had any questions to call him anytime. He is a really good man. I came home a shell. Could this really be happening again? I knew Trisomy 21 was Downs and was fine with having a baby with Down’s Syndrome. I told myself I would not google the Trisomy 13 or 18 but I did. I already knew they were bad, but I did not realize the extent. The next couple of days was a blur. I went into work to try and get my mind off of things. I prayed and prayed. I sent messages to people and asked them to think positive thoughts for the baby.
Diagnosis and Depression
Friday came and I did not hear anything. I went to my parents and tried to relax by the pool. I got a phone call at 4:30 from Dr. Khouzami he told me it was Trisomy 13. He apologized for the news, told me a couple of things I don’t remember and then asked if I had any questions. I asked him what do I do now and he explained I had two option to carry to term or to terminate, but he could not tell me what to do. He explained the percentage of Trisomy 13 babies that make it to their first birthday is under 10% and most do not make it to birth. Http://en.wikipedia.org/wiki/Patau_syndrome I cried. Josh came to get me and we cried. I then got angry, like inconceivably angry. The whole ride home the only thing playing in my head was that Blatz song “Fuck Shit Up” just on repeat. Josh stopped and got a pack of cigarettes, I got a bottle of Rose and we built a fire in the backyard and talked and cried. Don’t judge me I drank 2 glasses of Rose after I found out my baby has a fatal chromosomal abnormality. I asked Josh “is drinking a glass of wine the worst thing that could happen today?” and the answer was no the worst thing happened at 4:30.
The next couple of days/weeks were blurs of sadness. I emailed people with the results. I got a month off of work. We got amnio confirmation it was full Trisomy 13. I talked to my therapist and confessed about the Rose. She only asked if it hurt or helped? I told her it did neither but I felt normal for a second and I didn’t plan on making a habit of things, which I have not. Josh and I took a trip to Allegheny National Forrest and Cook’s Forrest. I just wanted to get away from everything and everyone. We came back and decided we would carry to term. I laid on my couch, didn’t shower, ate egregious amounts of cake and shitty food, cried and cried more. I went to my parents house just so I wouldn’t be crying alone. I cut myself off from all of my friends and family outside of Josh, my parents and my sister. I booked a trip to see my uncles in Albuquerque. It was nice to get away and nice that I had to be social with them. They were really great hosts and took care of me. I missed Josh while I was there but did not want to leave. I cried on my way home and noticed I had this unsettling, feeling of impending doom.
I came home and it was like I never left. I still did not want to see or talk to people. I felt horribly unsettled, the unknown was killing me, and I continued to morn the loss of my dreams of a family. I was jealous of all of my friends and family that have healthy pregnancies and babies. I was pissed at the moms on the stupid message boards for cursing the sex of their healthy baby. I was angry that my best case scenario was a child that would always have health problems, cognitive delays, and a shortened lifespan. I felt so bad for my poor baby, who didn’t deserve to be dealt this shitty, painful hand. I felt like I was a disappointment to my husband, with every loss I just get crazier and more depressed while he has to pick-up the pieces and be strong. I was tired of being the sad girl with the conception problems. I was tired of not having answers because the doctor informed us this was a “fluke” that happened during cell division. I was mad I may have to watch this baby die.
Perception, perspective, and positivity
I had a meeting with my therapist on a Tuesday and cried like it was my first time speaking about this. On Wednesday we had an appointment Dr. Khouzami’s office. The baby had a strong heartbeat and we found out it is a girl. I felt better knowing and calling her, she and her. I felt better. I talked to and met up with my best friends the next day. I joined a better message board called “carrying/carried pregnancy after poor or fatal prenatal diagnosis” and a “trisomy awareness” board. I shared my story and it was nice to hear from and read other women’s stories that knew how I was feeling. I emailed my job and asked if I could come back the following week on Wednesday. Josh and I went and got a dog and he named him Scooter. He is really cool and is pure love.
Most importantly, I came to terms with what is happening. I realize this poor baby has a hard life already and by being sad, depressed, etc… just does her a disservice. I realize that some things and people are not worth getting upset about anymore. I realize this is not what we wanted but it will be something else, something brief and beautiful and I am fortunate to feel every kick and I will one day get to meet her no matter what the circumstance. I realize that it doesn’t matter what you do or how you change yourself awful things can just happen. I realize that being a parent is difficult and selfless wether you get 2 minutes or 80 years. I realize I already love her so much and I have loved her and all my babies from the moment I got the positive pregnancy sign.
I still have sadness. I still have days I can not even fathom getting out of bed, and I still have so many questions that will not be answered. I am trying though and not beating myself up for having a bad day. And I haven’t mentioned my husband much, but I love him. He is my heart and my soul. He has been the most amazing support and inspiration through everything. I am lucky for what I do have. I am 25 weeks pregnant.