Unfortunately, many of our Committee members know all too well the pain of the issues we support - pregnancy loss, child loss, pregnancy loss, and infertility...
Sarah Dykstra is the Director of Fundraising for Charlotte & Theo's Butterfly Run Ottawa/Gatineau. She chose to share her personal story of her struggles with infertility, the loss of her son Trevor, and her difficulty with pregnancy after loss.
Thank you for sharing Sarah. And thank you for doing so much work to support Charlotte & Theo's Butterfly Run Ottawa/Gatineau!
Here is her story:
Our journey began after we were married in 2007. A year or two after I finally went to the doctor because my periods were crippling and up to that point everyone's solution had been the birth control and I was put on the “pill”, kinda counterproductive if you want to start a family. My doctor sent me for and ultrasound. After the ultrasound the nurse at the doctor's office called and told me I would never be able to have kids and set up an appointment to talk to the doctor. The doctor told me I had a heart shaped uterus and that would prevent me from having children but he was sending a referral to the Ottawa Fertility Clinic to see a fertility doctor. I was devastated! At the time we weren't ready for a family but also weren't preventing it to happen.
My husband Kevin and I went to see the fertility doctor and he said that everything looked normal with my uterus, the top was very slightly curved in but not enough that it would affect my ability to carry a baby. He proceeded to run the standard battery of fertility tests on both of us. It was discovered that I had PCOS (poly cystic ovarian syndrome) and I would likely need help to induce ovulation when we were ready to start our family.
We contacted the fertility clinic in 2012 and it took almost a year to get in. I started fertility treatments which involved taking a drug called Femera. Femera is a breast cancer drug that was discovered to have a side effect of inducing ovulation, we had to sign a whole pile of waivers because we were using the drug off label and because it carries an increased risk for birth defects. The first two rounds were unsuccessful. The third round we got pregnant. We started ultrasounds to make sure everything was good, the first ultrasound showed the baby's heart rate was 78 bpm and I was so thrilled and excited to see the tiny little heart beating. Then we went upstairs for the follow up with our fertility doctor only to have my excitement shattered. Our doctor told us the heartbeat was too low and that there was a very high probability that we would lose the baby. He scheduled a follow up ultrasound the following week. On April 16, 2013 we went to the ultrasound very anxious about the outcome. The ultrasound was devastating. It showed that the baby had stopped growing 3 days before and there was no heartbeat. I was devastated, the ultrasound tech was amazing and she took us up the back stairs to a private room to wait to talk to the fertility doctor. He came in to see us a while later. He explained to us that it was most likely a chromosomal problem and the pregnancy terminated because the baby wouldn't have survived and stressed it was absolutely not my fault and there was nothing I could have done to prevent it. Then he asked how I wanted to proceed and gave me the options to have a D&C, wait for the miscarriage to occur on its own or drug induce it. I opted to drug induce it because I didn't want to wait for the miscarriage to happen in its own.
A month and a half to two months later I got my period again and I called the fertility doctor and we decided to go ahead and start treatments again because we didn't know when I would next get my period. This time we were successful on the second round. The first ultrasound revealed twins!!! We went for a follow up ultrasound 2 weeks later and it was discovered we had lost one of the twins a few days earlier. My first reaction was relief because I had no idea how I was going to manage twins, then I had overwhelming guilt for feeling relief. I was upset that we lost the twin but was also very relieved and happy the other one was doing very well. We trucked along with the pregnancy with horrible morning sickness and tons of vomiting until just after Christmas 2013, I was due April 17th, 2014. Jan 27th, 2014 I woke up in the middle of the night and felt like I peed the bed, being super tired I fumbled to the bathroom in the dark. By the nightlight in the bathroom I could tell when I wiped the colour was wrong and I turned on the light and it was blood soaked and there was blood on the floor and a trail down the hallway to our bedroom.
I screamed for Kevin to find my pants and I put on a pad and grabbed a towel for the car seat. We drove to the Civic Hospital in dead silence both of us fearing we had lost the baby for sure. We got to triage and I told the nurse I was bleeding. She took me into triage and asked how bad. I pulled down my pants and they were soaked. She had me put them back on and took me to another room immediately where they did an ultrasound, confirmed my water broke but that baby was still alive. They gave me the first steroid shot for the baby's lungs, at that point I was 27 weeks and 6 days. I was transferred by ambulance to the General because the Civic can't handle babies under 30 weeks and they wanted me at the General before I delivered. The ride was bumpy and of course the highway on ramps were closed for snow removal that night. At one point the nurse landed on top on me in the ambulance and I went into labour in the ambulance. I arrived at the General, was admitted and completely terrified. At that point I was constantly on monitors and told they hoped I could make it 48 hours so I could get the second dose of steroids for the baby's lungs. At some point during the night I have a complete meltdown and the nurse came in to calm me down while Kevin was so exhausted he was asleep in the chair. I told her we didn't even have a name yet for the baby and what if he/she died all between sobs. She gave me a huge hug and said for now the baby looked great and that my contractions had stopped which were all good signs. She said the next goal was for me to make it to 30 weeks before delivering because then baby would have a really good chance for survival and likely not need to be on a ventilator very long if at all. Well time passed and I bounced back and forth between labour and delivery and the mother baby unit. I made it home twice on antenatal homecare, where a nurse came to my house every other day to check my vitals and monitor the baby. The first time I made it home for 3 days before I started bleeding again and had to go back to the hospital. The second time I made it home for 2 days and on Valentine's day I was admitted again because of bleeding. I spent the weekend in labour and delivery, Sunday they had discharged me from labour and delivery around 4pm but I told the nurse I was cramping really really bad. They decided to keep me and by 8:30pm I was 5cm. I asked for an epidural and the anesthesiologist was asking me questions while the nurse was trying to put a clip on the baby's head because they couldn't keep he/she on the monitor. Kevin was answering the questions for the epidural because I was having back to back contractions and couldn't talk. The nurse got the clip on the head and then said I needed to push because the baby was tachycardic. I didn't know how to push being a first time mom, the nurse told me what to do, well 2 pushes later she was out born at 9:07pm February 16, 2014. She was immediately wrapped in a towel and run by the nurse to the NICU and we had no idea if she was alive or dead or a girl or boy. I went into shock, the resident couldn't stitch my tear because of how badly I tore and it was an hour before the fellow could come to stitch me up and by that point the freezing had worn off. They refroze me and stitched me up. I showered and then I was wheeled down to the NICU to meet our baby. I was terrified, I didn't want to go, I still didn't know what our baby was. We met our daughter for the first time with tubes and wires running all over. We named her Elizabeth because that was the only girl's name we agreed on. It was 47 hours after our daughter was born when I got to hold her for the first time. It was the first time I was able to feel any connection to her. Her CPap had been removed so we could see her face finally. She was tiny but at 4lbs 4oz she was big for 31 weeks and 3 days gestation. We spent the next 5 plus weeks making daily trips to the NICU to deliver milk and for the hope that this feed we would be able to feed her or that she would take her bottle. March 22nd, 2014 Elizabeth graduated from the NICU and came home from the hospital for the first time.
It was amazing and terrifying all at the same time. I had no idea how to look after a baby especially a preemie. We muddled through, we battled with reflux and later severe milk protein allergy. Trips to CHEO for dehydration when she would get sick and needed ivs to rehydrate her. Now she is almost 4.5 and she is healthy, full of life, personality, crazy energetic, fiercely independent and incredibly smart.
June 16th, 2014 my dad was diagnosed with cancer at 56. The secondary cancer was bone cancer and it was in skull, spine, ribs and pelvis. He was admitted on a Wednesday to start radiation on his back to help alleviate some of the pain. In hospital he rapidly declined. We went to visit him. On Wednesday July 16th, 2014 when Elizabeth turned 5 months old he passed away, just one week after being admitted to hospital.
We had a trip planned to Indiana already and my Mom told us to go even though it was shortly after the funeral. We went to Indiana to visit close friends and go to Gen Con. I wasn't feeling well and Maddie, my friend and also a nurse told me to take a pregnancy test. I said no way I am pregnant. Well when we got home I was still feeling crappy so I did. Kevin and I had had one night of comfort sex and voila I was pregnant. The pregnancy was nerve wracking. I was always worried something would go wrong and the baby would come early again like Elizabeth. At 23 weeks I lost my mucous plug and the next day I started having contractions. I went back to the hospital and they gave me steroids for the baby's lungs just in case and because I had already had a preterm delivery. I was on put on modified bed rest. I had an OB appointment at 35 weeks on a Friday. The baby’s heart rate was around 125bpm significantly lower than I had scene it before, normally it was around 160-170bpm but my OB reassured me that it was still well within normal limits as it was above 120 bpm. Everything looked great I hadn't had contractions in weeks and baby was looking good on the ultrasounds. Saturday night Elizabeth (“Ellie”) was up all night with a horrible fever and Kevin and I were taking turns cuddling with her. I hadn't noticed that the baby had stopped moving. Sunday morning I started having bad contractions again. It was March 22nd 2015, we had Ellie dressed up in a green onesie with a cupcake and a tutu on it to celebrate her being home from the hospital for 1 year. I told Kevin we needed to go to the hospital, he had breakfast, we left Ellie with his parents (we had spent the night at their place). We got to the hospital and in a triage room and the nurse went to put me on the monitor to check baby and she couldn't find a heart beat. I wasn't worried as this baby was always hard to find. She came back a while later and tried again, still nothing and she said she was going to have the resident come in with the ultrasound machine. By that point I was getting worried but not panicked yet. The resident came in and searched for what seemed like an eternity and finally said "I am sorry but your baby is dead." I started crying. They told us they would give us some time alone and then would come back in and talk to us. Kevin and I both cried and barely spoke to each other and both called our parents to deliver the devasting news. The resident came back in and told us we could go home until labour progressed. It was at this point I found my voice, piped up and said I was not leaving the hospital carrying a dead baby. We had to wait until after 3pm for an ultrasound tech to come from the General to the Civic to do an official ultrasound to verify the baby was deceased. After the ultrasound we called our minister. He came to the hospital around 6pm to start making funeral arrangements. The nurse was going to start the induction once Kevin and our minister left to hash out some of the finer details. The nurse checked me and I was about 3 cm. I went into full on labour before the nurse was able to get the IV in for the induction. The nurse called the doctor and then called our minister as Kevin's cell phone was dead. About 10 minutes after the nurse checked me and I was 3cm our baby was born at 7:03pm before Kevin made it back to the room. We had a baby boy and the doctor put him on my chest right away. He was beautiful and he looked identical to his sister Elizabeth except that he was much longer and skinnier. We named him Trevor after my Dad. His full name was Trevor Elijah Dykstra, his initials formed T.E.D. after my Dad who although his name was Trevor he had been called Ted since birth. We spent the night with Trevor and held him as long and as often as we wanted. Over night the nurse had cleaned and dressed him and made molds and prints of his tiny hands and feet. He was born at 35 weeks and 2 days weighing 4lbs 15.5oz. The delivery room was so quiet you could have heard a pin drop with the exception of my labour sounds. The doctors and nurses didn't say anything. I was trying desperately to cross my legs to keep the baby in long enough for Kevin to get back to the room but that was not meant to be. Trevor came out on his own after going from about 3cm to delivery in about 10 minutes. After I delivered the placenta the doctor told me I had had silent placental abruption, there was a blood clot almost the size of the placenta and it must have been between the placenta and uterine wall as it didn’t show up on the ultrasound. The doctor told me based on the condition of Trevor's skin the abruption had happened within the previous 24 hours. There were no warning signs and no bleeding.
Almost immediately after delivery my blood pressure sky rocketed and I developed post partum preeclampsia. I was put on medication for it. By the next afternoon after our parents had left and we had reluctantly said goodbye to Trevor, we left the hospital again without our baby, however this time permanently. This time heading to the funeral home to plan his funeral and burial.
We had a private funeral for our parents, siblings and grandparents. I don't remember much other than all the mud, the casket rocking back and forth on the green straps used to lower it into the ground and being terrified his tiny coffin would fall in that tiny hole. I remember the one line from our Minister’s message about how the rest of the world keeps on passing by like the traffic on the road in front of the cemetery oblivious to what has happened. I remember looking around at everyone else and everyone except Kevin and I were crying and Kevin was holding our 13 month old Elizabeth because she was fussy in the stroller.
Losing Trevor was devastating, I was angry at the world, I was pissed off with God for letting my unborn child die. I was totally unprepared for the resentment I felt towards Elizabeth for surviving at 31 weeks when Trevor died at 35. I blamed myself for not noticing that Trevor had stopped moving. We moved in with Kevin's parents for over a month after we lost Trevor because I was not functioning, I couldn't look at Elizabeth because Trevor looked so much like her all I saw was him when I saw Ellie. It took a long time for me to get over the resentment towards Ellie.
We wanted to try again right away for another but I had to wait for my gall bladder surgery because I was having weekly attacks that were landing me in emerge to control the pain. I developed gallstones while pregnant with Trevor.
We started fertility treatments again as soon as I was recovered from the surgery. We were fortunate and got pregnant on the first try. It was a singleton pregnancy which was also a relief. The getting pregnant was honestly the easiest part of the entire pregnancy for me. A few weeks in I started spotting so I went for a few early ultrasound to make sure everything was ok with the baby, it was thankfully. My fertility doctor referred me to an absolutely amazing high risk OB, Dr. El-Chaar. I was very apprehensive the first time waiting to meet her, absolutely dreading having to tell my whole history to yet another doctor who couldn't be bothered to read a damn chart. She asked me a few questions and I looked at my friend who had come with me, to find the will to tell my history one more time. After I started my OB interrupted me, not rudely but said she wanted to tell me what she knew and then I could fill in the blanks or missing information. I was floored, pretty sure my jaw actually hit the floor! I filled in a few minor details and then she proceeded to tell me what her plan was for monitoring of the pregnancy and extra testing she wanted to do because of the placental abruption. I was amazed and immediately trusted her, which surprised me because I felt severely let down by my old OB when I brought up concerns with Trevor they were just brushed aside.
The pregnancy proceeded with minimal complications and I have all the regular tests done, I had IPS testing done at the request of my OB. It was negative, my ultrasounds were good. I was nauseous and had horrible heart burn. In January around the anniversary date of when my water broke with Elizabeth my anxiety levels started going up and I was having horrible dreams all the time where something would go wrong with the pregnancy. My dreams later turned into PSTD nightmares. They nightmares were horrible, they were so real, I would wake up sweating, shaking and sobbing and sometimes screaming. One of the nightmares was I had gone to a regular prenatal appointment and my OB looked at me and said I didn’t look good. She put me in a wheel chair and wheeled me down the operating room. The room was ice cold and insanely bright and full of all kinds of people. She did an emergency c-section and there was no time so she just sliced me open and I could feel the incision and felt her pull out my baby and our baby was completely blue and which point I would wake up with goose bumps, ice cold, shaking and sobbing. My sleep began to dwindle, to the point where I was only getting at max 2 hours of sleep a night and having nightmares several times a week. After 2 months of this I was having headaches all the time. I had a headache that was on day 5 and Elizabeth was being exceptionally trying one Friday in March. I called Kevin at work and told him he needed to come home and watch Elizabeth because I just couldn’t handle any more. He came home, I went to the hospital to get help. I was admitted to hospital and stayed there for almost a week. I saw a psychiatrist who started me on anxiety medication. I was admitted the week before what would have been Trevor’s first birthday. I was given a day pass on Trevor’s birthday, we went to build-a-bear and built Trevor a teddy bear. Then we went to a florist to pick up yellow daisies to take to the cemetery when we went to visit his grave. After the cemetery we returned to the hospital and Kevin’s parents brought Elizabeth and we had cake to celebrate. I was released the next day I think.
The next bump in the road was during an ultrasound, when PACs were discovered. This required a non-stress test and an echocardiogram on the baby. During the echocardiogram it was discovered that the right side of our baby girls heart was bigger than the left and at that gestation they should have been the same size and she was also still having the premature atrial contractions. The pediatric cardiologist met with us and said we needed to have a follow up to see if anything changes. The follow up echo did not have any more PACs but the right side of the heart was still bigger than the left. The cardiologist wasn’t worried since the 2 ultrasounds between the 2 echos did not have any PACs either. The cardiologist said that as long as our baby passed the physical exam when she was born then no follow up would be needed.
We had episodes of tachycardia during other ultrasounds that would result in more NSTs (non stress tests). I finally got to a point in the pregnancy where I told my OB I could not continue with the pregnancy any more and we discussed induction. She wanted me to get to 37-38 weeks and I wanted our baby girl out before 35 weeks when lost Trevor. I told my OB that I trusted the NICU team to keep my baby girl safe and alive more than I trusted my own body. Our compromise to get past the 35 weeks was to schedule an ultrasound when I was 35 weeks and 2 days, the point where we lost Trevor. Around 34 weeks I was to the point where I needed and end date, a point where the pregnancy would be over so we set the induction date. It was set for June 19th. Sunday morning around 8:30am we got the call from the hospital saying we could come in for the induction. We got to the hospital and they put me on the monitor to see how baby was doing, she was tachycardic again. Then they resident brought in the ultrasound machine since our baby girl was acrobatic and would not stay head down, fortunately she was head down. Baby girl’s heart rate finally started to settle down so they proceeded with the induction. About 11:30am they started the cervidil to start the induction. They checked me again about 12 hours later to see how I was progressing and decided they needed to leave it in. I was getting uncomfortable and wasn’t progressing much so I sent Kevin home to sleep in a real bed, also so I didn’t have to listen to him snore. The nurse gave me pain meds so hopefully I could sleep overnight. They doctor checked me again in the morning and took the cervidil out and left me to see what my body would do on its own. I walked a fair bit. The doctor sent me for a big walk around lunch time, when we got back I went for a nap. I woke up around 3 and they decided to start oxytocin since they couldn’t break my water because the baby’s head wasn’t engaged and they didn’t want to chance the cord coming out if they broke my water. Around 5 I had a breakdown, I was sobbing, I was terrified that something was going to happen during labour and that the baby would die. The nurses sent the doctor away while this was happening to give me space and time to recompose. Around 6pm the pain was insane, about as intense as full blow labour with Elizabeth and Trevor and was only getting worse. I talked with my doula and my nurse (who I loved, she was amazing) and agreed with what they were saying that taking the epidural would take one stressor away and allow me to conserve my energy to cope with the other stressors. By 7 or 7:30 the anesthesiologist was there to do the epidural. Once through all the questions I was back on the bed and they had the bed jacked way up to do the epidural when over the PA system there was a message for the owner of vehicle such and such colour with licence plate such and such to move their vehicle. Just seconds after that message the anesthesiologist got a page that only Kevin noticed and he ran out of the room saying he had an emergency and he would be back. I was in agony at that point and asked for the other drugs. Within 5 minutes the guy was back to do the epidural his emergency was cancelled. Once the epidural was in and I started to get relief things changed so much. Everyone was talking and laughing. I was telling stories and making everyone laugh. Around 9:30pm my nurse called the doctor and they checked me, I was 9.5cm with just a lip holding my water in. The resident told me she wasn’t allowed to break my water without consulting the on call OB, she went to do that. She returned and then proceeded to break my water, it was the weirdest feeling ever, the resident was soaked because when she broke my water I was in the middle of a contraction and it sprayed everywhere. Shortly after that I told the nurse the baby was coming and she said she needed 5 minutes to finish up her paperwork and her prep for the delivery. My doula took a quick peak and told the nurse to get the doctor and NICU team in the room ASAP cause this baby was coming. They passed her up under my hospital gown and put her on my chest and she opened her eyes and looked right at me. They poked and rubbed her until she cried. I held her for an hour and she rooted immediately and started to nurse a little bit. My doula cut the cord. We named our precious baby girl Aurora Laelynn Marijke Dykstra. Aurora meaning dawn, and Laelynn flower of hope. We wanted a name that reflected new beginnings and the hope we had that things would be ok and safe with our new baby. Aurora spent the night in the NICU to monitor her heart to make sure that the arrhythmias she was having during the labour didn’t persist after she was born. Her blood sugars dropped so they brought her back to me in the delivery room to nurse her. Once she fed I showered and headed to my room in the mother baby unit. Our stay after that was uneventful and I couldn’t wait to go home. The morning we got to go home was super emotional for me, it was the first time that we were leaving the hospital after delivering our baby with our baby!