Faces of Loss, Faces of Hope

Gina

Mom to Identical Twin Boys, Michael & Brendan, Stillborn May 2005

7 week loss September 1998
9 week loss July 1999
4 week loss January 2000
Complete Molar Pregnancy April 2000

Plainfield, Illinois

Where do I begin? First of all, as you read this you may think “right, no way all of this can happen to one person.” Well, I wish it hadn’t, but it did. Also, it takes a lot to explain all of this loss so you may need to read in segments. I swear, I could write a book.

My husband and I have been together since I was 14. We have been planning a family since we were children ourselves. We always thought we would have twins and joked about getting each of them identical puppies. We knew we wanted to be young parents but also knew we wanted to have a house and be done with college. We did it all “right”. We married in 1997. We waited a year and I went off birth control. I got pregnant immediately. We were stunned and so excited. My husband was SO proud. “I have super sperm!” We saw our BFP on a August 20th 1998. I saw the first signs of blood on Sunday. I saw my OB Monday who drew blood and repeated the test Friday. The numbers were going up but were not doubling. It “might be okay” but you have a “threatened abortion”. Really?  The medical field can’t come up with something better than that? The next Monday my numbers had started to fall and I was told that I was miscarrying. We were told to go ahead and try again after my next normal period. That normal period did not come for months.

It took us almost a year to conceive again. I took a test on June 14, 1999 and it was positive. I called my hubby and we cried tears of joy. FINALLY! I was due March 3rd, my mom and uncle’s birthday. We decided to wait a bit to tell everyone ‘just in case’. Then on July 2nd my sister came to my work to tell me that my Uncle Jerry, my mom’s twin, had had a massive heart attack and was in ICU at the hospital my husband’s mom worked at. This might sound minor to you but my Uncle Jerry was almost a second father to us. He was a HUGE part of our lives and my mother’s twin. This was a very big deal. My sister, who was pregnant, and I, drove downtown and spent the day crying and praying with my mom over my uncle who was in a coma. The next day, my husband came with me to see Uncle Jerry and we decided to share the good news since my husband’s mom and my mom and dad were all there. I was so excited to tell my mom that the baby was due on her and Uncle Jerry’s birthday. My mom and my husband’s mom embraced and laughed and cried. My mom went to Jerry’s bedside and whispered into his ear that we would be giving them this terrific birthday gift. He opened his eyes and looked right at me.

He would never open his eyes again. He was taken off of life support and died on July 6th. That night I started spotting. Three days later we buried my Uncle and I passed my 9 week baby (or as the medical community refers to it, “product of conception”). This was a dark time. I had no idea how much worse it would get.

I can’t tell you how many times I heard “you are young, you can try again.” Oh thanks, but that doesn’t really help. I started to see an RE at this point and we were put on Clomid. Nothing happened. We both got all the tests and we were both “perfect” my husband does, indeed, have super sperm. I even had a hystosypinglagram and was told “you have a beautiful cervix and uterus” umm gosh, I wish my babies thought so. We moved on to Clomid with IUI…nothing. We ended up using injectables with IUI and finally got pregnant in January but my initial HcG number was 10. Not great. My follow up 48 hours later was 8. I was losing this one before it even began. I had the repeat loss panel…perfect.

We did more injectables with IUI. I got pregnant in April. This time, my numbers were great. On ultrasound, there was an empty sac but that is normal so early. A week later my numbers are still good!  Ultrasound however, still shows an empty sac. I am told that can be normal and to wait another week.  No need to repeat HcG as long as no bleeding was occurring. My husband and I were so excited. We had been through so much, and we were getting such great care, this was going to be fine. Not so much. A week later there was still no fetal pole or heartbeat, just an empty sac. I was a mess. How could this be happening again? Four miscarriages? This just doesn’t happen. I was scheduled for a D&C the next day so they could test the fetal tissue. I woke up from surgery sobbing. The nurse on staff told me that her daughter had suffered six miscarriages before going on to have 4 healthy children. SIX!?! I really didn’t think I had it in me to go through this again. I knew that I was not ready to give up though so we kept at it.

When seeing an RE it is required to go see them on cycle day 1. So, after the D&C I called about a month later when my period started and went in for blood work as always. Though I would not be allowed to conceive that cycle, they wanted to monitor an un-medicated cycle. I received a call that afternoon that I needed to return for more blood work. That had never happened before. I went again and was told that there was a mistake at the lab. The next day I was called to come in for an ultrasound because the blood work had shown highly elevated HcG (#’s in the 1000’s). I was told that there could be left over tissue that was not taken during the D&C, a new pregnancy in the fallopian tube or a new, healthy pregnancy. I decided to call my perinatologist (who I had not been able to use yet). He agreed to see me. I was able to get an appointment for that afternoon but my husband could not leave work again so I went alone. The first thing they did was an ultrasound. The moment they touched the wand to my belly I knew something was horribly wrong. I had seen countless ultrasounds by this point and what I was looking at appeared to be a bunch of grapes. At that point doctors were coming in at an alarming rate. I kept asking what was going on and the peri finally said “it looks molar”. I had NO idea what that meant. I was told to get dressed and would be meeting with the doctor. I asked if I could make a call first. I called my mom who works for surgeons. I told her exactly what the doc had said “it looks molar.”  She dropped the phone. The other nurse picked up and started asking me questions. When she asked me if they had scheduled a hysterectomy I totally lost it. I crumpled on the floor. A hysterectomy!?!  What the hell was going on!?! When I was helped off the floor and ushered into the office I was greeted by the perinatologist and the head of Gynecologic Oncology, Dr. Yordan. I said, “The head of what?, Oh my gosh, does the baby have cancer?!” The doctors looked at each other and the Oncologist reached over and held my hand as he said, “there is no baby, that IS cancer.” HUH? How the hell can a baby be cancer? I had a complete hydatiform mole, a cancerous tumor that forms when 2 sperm fertilize 1 egg. I had to have another surgery, immediately. I called my husband and sobbed. I drove over to my mom’s doctor’s office and we all sat down and talked about what was going on. The next day I had the surgery. Once my HcG numbers went back to zero I had to wait a year to try to get pregnant again. My numbers had to be checked weekly, then bi weekly and lastly monthly to be certain that the tumor was not growing back.

The RE had a plan to start IVF when my year was up. He wanted to implant only the strongest embryos.  My HcG had been at zero for months so I was given the go ahead to start the long IVF process In December. After going to the classes and watching the videos as well as starting a payment plan to cover what insurance didn’t, we were ready. I noticed some light spotting so I called the RE office. I told her that my day 1 would be the next day since spotting had started. I scheduled my baseline blood test for the next morning, Saturday. On Monday, my period hadn’t started. I called in and the nurse said they would run a couple additional tests on the blood from Saturday. I got a call an hour later that the pregnancy test was positive. I said “oh, I am sorry, you must have the wrong person, I haven’t even started yet.” The nurse said, nope, you are definitely pregnant. I dropped the phone and cried hysterically. This was not the plan. My body was not ready. I did not have any help at all. This was going to be miscarriage number five. My poor hubby tried so hard to be supportive and upbeat. He was just as terrified as I was but never let on. We were wrong though. Nine months later, September 2001, my perfect, alive, son was placed in my arms. FINALLY.

I went on to have another child without any medical intervention in 2004. After that, I went on birth control for the first time in 7 years. I used one of those patches. I lost my job. We were broke in the worst way. Years of infertility is not cheap!! When my daughter was just 6 months old I discovered I was pregnant. I was terrified. We were in no shape to be expanding our family and my baby was only 6 months old. What were we going to do? With my history I am followed very closely and called the peri immediately. My initial blood work was fine. 48 hours later it was still fine doubling as normal but the numbers were high. Since I was on the patch I had no real idea when I had conceived but we were not having sex very often at all so I was pretty darn sure it was my husbands birthday. If that date was correct I would be six weeks and the numbers matched that. When I went in for the dating ultrasound though, my uterus appeared empty. I was so upset. I felt so guilty for not being excited and thrilled and I was apparently miscarrying yet again. I begged God to not take this child from me and that we would figure out a way to make things work. I knew we could.

I was sent for a level 2 at the hospital. The tech said that there was a tiny sac but no fetal pole. There was a chance that I was earlier than the numbers indicated and I needed to follow up with my peri in a week. I was left with no answers so I floated between despair and excitement for the whole week. The morning of my follow up I woke up to spotting. I was sure that I was already losing the baby. I woke my husband and begged him to come with me. I could not go to another appointment alone. He called in and came with. The peri was not available due to an emergency delivery and I was to be seen by a physicians assistant. She put the ultrasound wand on my belly and saw nothing. She said “your history leads me to believe that this pregnancy was never viable.” Wow. I really was having a fifth miscarriage.  I just could not believe it. Why would I get pregnant while on birth control only to end up losing another baby? I cried buckets as I was told that with my numbers being so high I was being scheduled for a D&C. The tissue would be tested immediately and if there was any sign of another hydatiform mole I would be having a hysterectomy. I was speechless. I knew that I had to focus on the children that I had been blessed with and I knew many women who had not been given that chance. Still, to be ending my chances of having the large family we had always dreamed of before I was even thirty was devastating. I continued to beg and plead with the Lord to have mercy on me.

I had to go for an ultrasound and blood work the night before my procedure while my hubby stayed with our kids. The ultrasound tech kept asking me to switch positions, hold my breath, stop crying, it was torture. She said “why are you here again?” I tearfully said, I am having a D&C and possible hysterectomy in the morning. She responded “not tomorrow”. I was hysterical, “no, tell me it is not molar again, please, I can’t have a hysterectomy, I am only 28 years old!” She placed her hand on my belly and a tear rolled down her cheek. She turned the screen to me and there, at the very top of the screen, was a bean with a thumping heart!! There was a baby in there!! A perfectly healthy, growing baby that my doctor was about to rip out of me! I almost fainted. I was once again alone and had no idea what to do. I told the tech to get my doctor on the phone. When he finally called me he said,” I think we are going to delay your D&C, your numbers are still doubling and we want to wait a week.” I said, “have you talked to the hospital yet?” He replied, “No, I do not have the report.” To which I snarkly replied “Oh, well, let me give you the report. There is a perfectly healthy baby in my uterus. Not a molar pregnancy and not an empty sac, a healthy baby WITH a heartbeat so you can go **** yourself.”  And then I hung up. I never, ever, ever talk that way but there were no words at that moment, none.

I then called my husband. What do you say? “Hi. Well, I actually have good news and great news.  Good news, I do not need to have surgery tomorrow and there is no tumor growing inside me. Great news, there is a healthy baby with a strong heartbeat growing in me instead!” My husband was speechless. How could we have 4 ultrasounds and no one knew? I told him what I said to the doctor.  He came up with some additional choice words but we immediately put it behind us. We went to see a new high risk OB the next morning, TOGETHER. He confirmed the healthy baby and said that the baby was attached at the very top of my uterus. Babies do not usually attach there and that is how it had been missed until it was large enough to be seen a bit lower. No excuse but at least a reason. He told me to come back in two weeks unless I had any problems. I didn’t, not one! God had indeed heard me and he was going to make everything work out. Our financial situation was getting worse and we were being foreclosed on, owed back taxes and had no money but God knew what he was doing and he would never allow a young family like ours to be homeless. Surely, the solution would appear.

At my follow up two weeks later I was alone again when the doc said “okay, lets see how many are in there.” An ice breaker he must use frequently but inappropriate since we had seen one baby twice just two weeks ago. He was searching and searching my belly and I started to have a panic attach. He said, “calm down, everything is fine, I will show you in a second.” I tried, but I am well versed in a doctor who does not see what he is expecting. I said “please”. He turned the screen to me and showed me a large blob with TWO heartbeats. He said “do you know what that means?” I said, “well, I would say twins but there is no separation, Oh my god, the baby has two hearts!” He moved the wand a bit and there on the screen were TWO moving bodies. TWO. My first thought was “man, I really have to stop going to the doctor by myself!” The doctor told me that they were the same size and looked great but that it appeared they were in the same sac making them identical and we would have to watch for twin to twin transfusion. Okay, that doesn’t sound so bad. I called my husband again having no idea what to say. I said “the rollercoaster continues” He was silent. I said “are you sitting?” He said “Gina, please, I can’t do this, just tell me what is wrong.” I said well, nothing if you are okay with the idea of twins.  “What twins?” Kev, we are having twins. “What? How? We just saw one baby. I know I only saw one baby”. It was hysterical. I then called my mom who was so very excited, her being a twin and all. My sister was the funniest though. She said “man, you really have the corner on drama.”

We continued to see the high risk doc every two weeks and got to see the babies everytime. It was amazing! We were scheduled with maternal fetal medicine at 17 weeks for a Level 2 ultrasound. We would get to find out if we were having boys or girls. The ultrasound was marvelous and I have a 30 minute video of it! We quickly found out that we were having boys! Our identical twin sons, a dream 14 years in the making, was coming true! My husband and I were in awe of our children. When one would kick the other would move and at one point they had their feet intertwined! We thought it was so cute.

Except, this was not fun, not cute and not good. In order for babies to touch one another they had to be in the same gestational sac, and sharing a placenta. The doctor showed us that one of the boys was “stuck”. His umbilical cord was tangled. This could be good news since one of the babies could not move there was less of a chance that the umbilical cords would knot and cut off blood supply therefore killing my sons. We went from cloud nine to ground zero in 5 seconds. This can’t be happening. Really?  Who ever heard of something like this? Not me. Not anyone I knew. No one. We were all alone. The doc told me all of the horrible statistics and that 50% of these pregnancies end in fetal demise before 24 weeks. He would see me every two weeks until 24 weeks. If we made it to 24 weeks, I would be hospitalized on full hospital bed rest and the boys would be monitored 3X daily, at least. If everything went well, the boys would be delivered at 32 weeks. We had a long road ahead of us.

I was in denial. I joined monoamniotic.org and read all the success stories refusing to believe even for a moment that God would ever forsake me by taking away a lifelong dream and something that was a gift we had no idea we wanted so much. We worried, of course, but we never thought we would be burying our sons. The next day, my son wanted to play doctor and asked me to lie on my belly. I did and I was able to feel the boys moving around for the first time!! I would repeat this activity as often as possible over the next few days. On Sunday morning, I woke feeling horrible. I went to lie on my belly for my ‘pick me up’ as I felt my boys moving around. Nothing. I drank a large glass of orange juice, nothing. I think I knew right then. I think I knew before I even layed down that my boys were dead. I still would not believe it though.

That day I did all the laundry, cleaned the kitchen, vacuumed the house and called my mom and dad. I told them that I wanted them to come babysit for us the next night because I wanted Kev to come with me to the doctor. I had a feeling I was going to need him and I would not get life changing news alone again. I was right. The next night as I lay down on the table I asked the doc if I could donate cord blood even if the twins died. He said “negative thinking is not going to help these babies”. The moment the ultrasound wand touched my belly it was obvious my sons were gone. They lay lifeless together at the bottom of my uterus. There are no words and each of you knows that so I will not try. At that moment something inside me snapped. I listened to our options, one of which was going to an abortion clinic downtown so they could “remove the twin fetal demise”. Um, no thanks. I think I will pass. We went home and explained the situation to my parents and my son. It was worse than terrible. My son was three. He cried, hit his legs with closed fists and said “no mom, I want to have my brothers”. It has been five years and as I type those words tears flow down my cheeks. These babies were so loved and so wanted and are still so missed. My gosh, the pain we all have had to endure is unthinkable.

I delivered on May 18th. Michael and Brendan were born at the exact same length and exact same weight. The cords were a mess. They were so tangled and entwined you could barely tell one from the other and they were thin. There is no doubt what killed my sons. At least we have that. Unlike so many of you with no answers, at least we have that.

On May 27th I tried to take my life. I have never been a depressed person. I have always found the joy in life. Through all the miscarriages and all the infertility I never doubted that life was good. But with the financial situation we were in and the delivery of my stillborn twin sons I had nothing left.  Thankfully, my suicide plans were interrupted and I was hospitalized for a week. During that time we were forcefully removed from the only home we had known. My husband had to figure it all out and move our family into my parents home without me. I had let him down in so many ways. I had let everyone down in so many ways. My husband, however, never has seen it that way. He loves me in a way that I didn’t even realize and he is amazing.

Today, I am healthy and happier than ever. My marriage is strong and my life is on track. I miss my sons in ways that still surprise me. In some ways, I seem to miss them more as time goes on. I was told it was a bad idea to ever try to conceive again so I had the Essure procedure done. That is a decision I have come to regret. I hate that I will never again have the joy of life inside me. I will never again have the thrill of delivering and the snuggles of a newborn at my breast. I grieve that in a major way. I am stronger now than I was five years ago and I know I could handle anything. Together, my husband and I can handle anything. If nothing else, my boys certainly taught me that.

You can contact Gina at gina.shanahan@hotmail.com