‘The doctor said, ‘She’s bleeding out!’ I couldn’t breathe. I was told it’s ‘anxiety.’: Woman diagnosed with peripartum cardiomyopathy during twin rainbow pregnancy, ‘I’m one of the lucky ones’

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“Our infertility journey started shortly before we got married, in 2014. I had been married before, had three children naturally with no issues, and then reluctantly had my tubes tied due to pressure from my then-husband.

I ended my first marriage as a broken woman. We were high school sweethearts and the loss of his family, who had been my family for 20 years, was a huge mourning process for me. I honestly didn’t ever see myself remarrying. Then I met this man who made me laugh so hard my cheeks hurt when I came home from our first date. We are complete opposites, yet we fit perfectly. I am ten years older than my current husband. He had no children of his own, and we discussed his desire for children shortly into our relationship. We researched and decided I would have tubal reversal surgery. In August of 2014, I had the surgery. It was a very rough surgery with a rough recovery. We paid $7500 out of pocket for that surgery but we were so hopeful it would bring us a child. At the time, he was 28 and I was 38.

Courtesy of Jennifer and Austin

We got married in October of 2014, very hopeful we would be pregnant right away. We knew my age was a factor, but my doctors said all of my hormone levels were great and I had ‘the ovaries of a 25-year-old’ and we shouldn’t have any issues. Not one doctor we consulted mentioned having my husband tested, even though male factor infertility accounts for 30% of infertility issues. After six months of medication and tracking my ovulation, we were not pregnant and went back to the doctor. If I’m being honest, I will admit each month I stared at yet another negative pregnancy test wrecked me. I felt like my body was betraying me. Even though we were told my age was not an issue, I worried this is why we weren’t getting pregnant. If I’m being really honest, I will say I considered leaving my husband then. He comes from a large Catholic family and I thought I would be letting him, and them, down if we couldn’t have a child. Silly, I know but Clomid makes you nuts.

I then had two laparoscopic surgeries, a month apart. One of my tubes was blocked. We were referred to a specialist and finally, someone suggested we test my husband before we proceeded any further. We found out we had male factor infertility, most likely due to a spinal cord injury my husband had suffered in high school. We were told our only chance to conceive a child would be through IVF. We were devastated. Had one doctor said we should check my husband, we could’ve saved time, money, a very painful surgery, and most importantly, months of tears over negative pregnancy tests. We are a law enforcement family and while we have good insurance, it did not cover infertility treatments. While some states have mandated infertility coverage, Ohio is not one of them. Worrying over the financial aspect of IVF, the emotional and physical aspect, and the religious aspect of IVF was mentally draining. We are Catholic and the Catholic Church does not support IVF or any other fertility treatments for that matter. We decided if we were to move forward, this would be done with the utmost respect for life. None of our embryos would be discarded, tested on, or destroyed. We worked out the financial aspect and decided to take a leap of faith and go forward with IVF. My husband was 100% sure it would work. I was 100% sure it would not. We were told on average it takes three embryo transfers to achieve a pregnancy.

Courtesy of Jennifer and Austin

An IVF cycle consumes you. I had three children prior and still had no idea how my body worked. It’s not something you really think about when you’re able to get pregnant naturally. I had to give myself daily injections and have frequent monitoring appointments to see how things were going. I felt very alone. I didn’t know anyone who had ever gone through this before. We had friends and family who were super supportive, and we had some that weren’t. I can’t tell you how many times I heard, ‘Well at least you have children.’ It angered me. Yes, I did, but secondary infertility is STILL infertility and still very painful. More importantly, I had children but my husband did not. He deserved a child of his own. It angered me when people acted like that was a non-factor. I don’t think people understand how hard infertility is on men too.

We finally made it to egg retrieval day. Our clinic in Ohio does not do sedation for egg retrieval. My husband was beside me holding my hand the entire time. They were only able to reach one ovary during my retrieval, due to scar tissue. I was devastated and afraid we wouldn’t have enough mature eggs to fertilize. We ended up with one perfect little blastocyst. We said a prayer and did a fresh transfer on day 5. We were ecstatic two weeks later when they called with my blood test results to tell us we were pregnant. I couldn’t believe it worked on the first try. I walked on eggs shells my entire pregnancy. I don’t remember ever feeling that way during my natural pregnancies. I never expected any outcome but a baby in 9 months. Going through infertility puts this fear in you something will go wrong. Nine months later, we welcomed our son, Samuel. He was born two weeks after I turned 41, happy and healthy. My husband sobbed when he saw our son. His joy made every single injection, surgery, penny, and tear worth it.

Courtesy of Jennifer and Austin
Courtesy of Jennifer and Austin

But, our story continues.

My children from my first marriage are older so we wanted our son to have a sibling close in age to grow up with. We had no embryos make it to freeze so we would need to do another complete cycle. This time, we found a clinic in New York that was significantly cheaper than our clinic in Ohio. Our son was 9 months old when we started a new cycle. I did my monitoring locally and then we traveled to Syracuse for retrieval and transfer. We were shocked when we got the call the next day we had NINE fertilized embryos.

Courtesy of Jennifer and Austin

We decided to do a five-day fresh transfer of our best two embryos, on the advice of my doctor. This time, we both 100% thought it would work. We even bought a ‘Big Brother’ shirt for our son to wear at his first birthday party the following month. We thought it would be a fun way to surprise our families, who did not know that we were trying again. We were devastated when it didn’t work. I can’t put into words how hard that hit us both. We still had 7 more embryos though so we knew our take-home baby was in one of those. We did four more transfers over the next five months. Two miscarriages and two negative tests. We didn’t understand. Our embryos looked perfect. I was mentally done. I knew I couldn’t handle another loss or one more time of my husband finding me crying on the bathroom floor. I know it was hard on him too. He tried to be strong for me but I know he was hurting as badly as I was.

Courtesy of Jennifer and Austin

Our doctor suggested PGS (where they test your embryos for any abnormalities and then discard them if they’re deemed ‘abnormal’). This was not an option for us as it went against everything we believed in. He also suggested autoimmune testing for me. I honestly thought it was a waste of time. I’d had three natural pregnancies and a successful IVF pregnancy. How could I now have something wrong with me? Nineteen vials of blood later, we found out that I now had very high ANAs (Antinuclear Antibodies). High ANAs cause your body to attack itself and embryos. We aren’t sure what caused this but I have thyroid issues and one autoimmune issue usually causes another. My doctor recommended we do another retrieval and do a full autoimmune protocol.

I’ll be honest and say I didn’t think I had another retrieval in me but we desperately wanted our son to have a little brother or sister. We decided to do one more retrieval. We agreed we would do one more embryo transfer with the immune protocol. If it didn’t work, we would walk away and donate any embryos left to another couple. Many couples need donor eggs, donor sperm, or even donor embryos to have a child. We wanted to make sure each of our embryos had a chance at life, even if it wasn’t with us.

Courtesy of Jennifer and Austin

First, I needed one more surgery. My doctor recommended I remove both my fallopian tubes and clean up the scar tissue in my uterus due to prior c-sections. A month later, I started injections for what would be my last egg retrieval. We transferred the best two, again on the advice of my doctor. I had little hope it would work. 7 days later, I ended up in the ER with severe OHSS (when your ovaries get over-stimulated from the hormones). I was in so much pain. I felt like I couldn’t breathe. My stomach was so extended, I looked five months pregnant. They ran labs in the ER and came in to tell me I was pregnant. Pregnancy makes OHSS worse but I didn’t care. We were elated I was pregnant but also scared we would miscarry again. I had to have fluid drained from my abdomen twice and was in significant pain. A week later, an ultrasound showed we were expecting twins. We were shocked. We had less than a 2% chance of multiples, due to my age.

Courtesy of Jennifer and Austin

I bled heavily my first trimester due to a hematoma (Drs called it a ‘threatened miscarriage’). I had to get biweekly Intralipid infusions my entire pregnancy. We didn’t find out the genders of our twins before birth. I think I didn’t want to know because I was afraid to get too attached. I honestly didn’t think we’d make it through the pregnancy. At 34 weeks and 2 days, we welcomed twin boys, Henry and Charles. They were born two weeks after I turned 43, on their big brother’s second birthday. Yes, all three of our little guys, share the same birthday.

Courtesy of Jennifer and Austin

Our twins had to be delivered early because I developed severe complications. While pregnant, I developed Peripartum Cardiomyopathy, or PPCM, which is pregnancy-induced heart failure. I had never heard of this until it happened to me. How could I have multiple children and never hear of this? How could multiple doctors not catch it? When I was pregnant with our two-year-old, I had some issues and ended up in the hospital for the last two weeks of my pregnancy. I had problems maintaining my potassium levels so they put me on fluids. I kept telling them I felt like I couldn’t breathe. That I couldn’t lay flat to sleep. That I was so tired I felt like death. I was told it was ‘anxiety.’ I know now these are classic heart failure symptoms that should not have been missed. One nurse told me to ‘Go home, YouTube mindfulness, and enjoy a glass of wine.’ A chest X-ray showed some fluid in my lungs but no one seemed concerned. I got worse as they continued to push fluids. Finally, it was suggested that an echocardiogram be done. The cardiologist they sent in said I was ‘young and healthy’ and he wouldn’t find anything. He honestly seemed annoyed he was wasting his time on a pregnant woman. He came back a few hours later to tell me he ‘thought’ I had Cardiomyopathy possibly caused by pregnancy and my ejection fracture was was ‘low normal.’

They finally delivered me two days later. The cardiologist I saw after our son’s birth didn’t seem to know much about PPCM. He also questioned if I even had it or if the hospital had just overloaded me on fluids. He sent me to a PPCM specialist and she too questioned if I really had PPCM. With no history of heart issues in myself or my family, it seemed more likely the hospital had simply overloaded me on fluids and my heart couldn’t handle it so my EF had dipped a bit. We consulted with multiple cardiologists and two MFM doctors before we moved forward with another pregnancy. All approved another pregnancy.

Courtesy of Jennifer and Austin

With the twins, I exclusively went to a high-risk doctor. One, because of my age, two, because I was carrying multiples, and three, because they wanted to monitor me closely to make sure I didn’t have potassium issues again. Choosing that doctor at that hospital saved my life. This time was different. I had a team of doctors who had experience with PPCM. They knew what to watch for. They decided then that my twins needed to be delivered right away. We knew it was a bad situation. We weren’t sure I would make it through the delivery. I asked my husband to call my mom and siblings and my older children to get them to the hospital. Because I had to deliver in the heart center, my husband couldn’t be in the delivery room. I don’t remember a lot from that day or even the week after. I do remember the cardiologist asking what he could do for me before the delivery. I asked him to hold my hand and to please not let me die. I remember the anesthesiologist asking if I had any questions. I remember the look on his face when I told him if a choice had to be made, to save my babies, not me. I remember signing the consent for ECMO. I remember hearing it was two boys. I got a glimpse of Baby A as they rushed him to the NICU. I remember they let my husband come in for a minute to see me. I remember telling him I loved him, thinking I’d never see him again, I wouldn’t be here to raise my babies, or to see my older kids graduate or get married. I remember hearing the doctor say I was bleeding out and she needed to do an emergency hysterectomy to save my life. I remember thinking I was dying as I closed my eyes.

Courtesy of Jennifer and Austin

I woke up for a few minutes later that night in the ICU. I remember looking up to see a male nurse. He said, ‘Hello, my name is Byron, and I’ll be your nurse tonight.’ I remember muttering some profanities. (My ex-husband’s name is Byron.) The next few days were very rough. I was heavily sedated and drifted in and out of sleep. I developed an Ileus, which was quite literally the worst pain I’ve ever had in my life. I had to have an NG tube in for several days. I lost 60 pounds of fluid within 5 days of delivery. All of that was nothing compared to the fact I didn’t see my twins until they were a week old. I was too weak to leave the heart center, and since it was flu season, they wouldn’t bring them from the NICU to see me. I slept a lot but when I was awake, I cried. I thought my babies wouldn’t know me.

Courtesy of Jennifer and Austin

Finally, after a week, I was allowed to go meet my babies for the first time. I was too weak to visit long but it was amazing to see them. They were 5 pounds 14 ounces and 6 pounds even at birth. Baby A needed the lowest CPAP setting for two days, Baby B never needed CPAP at all. Both had some feeding issues and needing a feeding tube for a bit. I was allowed to see them once a day, but only for about a half-hour and I had to wait until a nurse was available to take me to the NICU because I was still on a heart monitor. That waiting was awful but I am so appreciative of those nurses who made the time to take me to see my boys.

Courtesy of Jennifer and Austin
Courtesy of Jennifer and Austin

Our boys were able to go home after 14 days in the NICU. Miraculously, I got to go home on the very same day. They expected me to need an ICD at the very least. I’ve since met many women who needed heart transplants due to PPCM. I was lucky. Although it was a long hard process, with months of Cardiac Rehab, medication, and lots of praying, I grew stronger. My husband had to take 8 weeks off work to care for me and the babies when we first came home. I lost so much weight so quickly, I have loose skin everywhere and little upper body strength. I was diagnosed with postpartum anxiety, postpartum depression, and PTSD from the trauma surrounding the birth of our twins. The first 18-20 months after they were born were very hard. I had nightmares about dying during delivery and never seeing my children again.

Courtesy of Jennifer and Austin

Our twin are now 2. Although I will be on meds for life, my heart has recovered to a normal EF. I work hard to stay healthy so I don’t have a relapse. I workout, walk daily and even ran a half marathon when our twins were a year old. With therapy, and the support of my husband, my anxiety and PTSD has gotten better but I still struggle some days. If I have indigestion, I immediately panic and think it’s my heart. I’m hoping someday I get past that fear.

Courtesy of Jennifer and Austin
Courtesy of Jennifer and Austin

I’m a firm believer everything happens for a reason. I have met some amazing women on our infertility journey. I have been able to help others on their journey. I co-admin an online infertility support group with some amazing women. I think that’s why God set us on this journey. We are blessed with six beautiful children. One daughter, 26, and five boys, 23, 16, 4, and 2-year-old twins. We are currently in the process of donating our leftover embryos to another couple. We hope God blesses them as he has blessed us.

We spent four years and nearly 3 million dollars to get our boys. Five surgeries, four D&Cs, three egg retrievals, six embryo transfers, thousands of needles, and lots of prayers. All worth it.

We are very open about our infertility journey but that journey also left me with something more important to use my voice for. The U.S. has the highest maternal mortality rate in the world. I am a PPCM survivor. PPCM affects approximately 1 in 3,000 pregnancies. It can develop in the third trimester or up to five months postpartum. Women are dying from it and doctors are missing it. I am one of the lucky ones. I am alive to share my story. My doctors didn’t listen to me the first time. I was ignored and made to feel like it was ‘all in my head.’ I found a great PPCM support group and I share my story with everyone I know.

Courtesy of Jennifer and Austin

With everything going on in the world right now, I’m using my voice to spread light not only on Maternal Mortality but also on the fact that black women are 3 times more likely to die of complications of pregnancy and childbirth, regardless of education or income. Black women are at a higher risk to develop PPCM and have a higher mortality rate from PPCM. In part, due to not being listened to by their doctors simply because of the color of their skin. I am trying to do my part to end racism by making sure ALL mothers are heard and get the treatment and respect they deserve. No mother should die while trying to bring life into this world.

While we acknowledge our journey with infertility was shorter than others, it was heartbreaking and not something we would wish on anyone. If you are still on this journey, know we are praying for you. We would like to extend our thanks and gratitude to Ohio Reproductive Medicine for providing the science that gave us our 4-year-old, CNY-Syracuse for the science that gave us our twins, and OSU-Ross Heart Center, and all the amazing doctors and nurses who took such great care of me and our twins. Special thanks to Dr. Saurabh Rajpal & Dr. Curt Daniels. Without these two amazing cardiologists, I would not be here today.”

Courtesy of Jennifer and Austin

This story was submitted to Love What Matters by Jennifer and Austin from Ohio. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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