Story #67 - Postpartum Pandemic Stories - Alyssa, San Francisco CA (USA) - On Stillbirth, IVF, Infertility, Grief, Mental Health & Hope
I had surgery done to my fallopian tubes when I was 22 years old. The overview report of the operation stated that the doctor was able to save my right tube, so when the time came to try to conceive, we didn't think there would be an issue. When we couldn't get pregnant, we saw a reproductive healthcare specialist at Kaiser. He was the first person to read the full report of the surgery, minute by minute, and he found out that they had mislabeled the overview. My right fallopian tube hasn't been saved as I was led to believe all these years: it was gone.
For most women, this wouldn't be a problem. But I have two uteruses, each connected to only one fallopian tube. My right uterus is the one connected to the open cervix—the other one is closed. So by having that tube removed, no egg ever dropped, and I couldn't get pregnant.
After finding that out, we decided to do IVF. There was nothing else we could do but to move forward. On our first round, we had a phenomenal outcome: twenty-seven eggs, all mature. Seventeen made it to day five. We sent those embryos to be PGS tested for genetic defects. Twelve of them came back normal. We were in the clear.
We chose a male embryo. Because of my two uteruses, I had to be put under for the transfer. I had a lot of anxiety around that. I also worried I wouldn't be able to carry him because of my physiology. But we were lucky, and it worked: after nine weeks, they confirmed that our little boy was sticking. They found the heartbeat, and the chance of miscarriage was low.
After that, I transferred to a regular OB at UCSF. We had a pretty tight monitoring schedule, and we tried to be on top of everything to make sure it'd be ok. I had another ultrasound, then the first-trimester screening. Unfortunately, this one came back with 1/20 chance of Down syndrome, which is strange because PGS testing promises 99% accuracy. We also did the NIPT [noninvasive prenatal testing], and this one showed nothing abnormal.
Came the second-trimester, and we decided to redo the NIPT. This time, it showed something was off and determined 1/70 chances of Down syndrome. It was a little bit better, but it still hurt. My placenta hormones also required monitoring. Mostly, we were confused about the genetic testing results. For these reasons, we chose to do an amniocentesis at sixteen weeks, which is more invasive but also more precise. It came back normal.
I knew I was still highrisk, but after that, we allowed ourselves to celebrate. We had to go to the hospital for monitoring every week anyway, so we knew the placenta, my cervix, and the baby were watched closely. We felt safe.
(Photo by Didi von Boch, “The Window Shot”)
At 18 weeks, I went in by myself for a cervical check and an ultrasound. The technician who was doing the test asked me if I wanted to know what I was having, but since we'd done IVF, I told her we already knew that it was a boy. She said, "Ok," then went quiet.
What was supposed to be a thirty-minute ultrasound lasted four hours. The doctor came in and asked me to call my husband.
At first, they were trying to see if the baby as ok because he was in a weird position. Then they told us he wasn't developing as he should; this is why the technician couldn't see that he was a boy. They asked us to come back at twenty weeks for more testing and to see specialists.
Ultrasounds look for shadows. His showed a split that suggested hypospadias. This condition is relatively rare; it's when the opening of the penis is on the underside of the organ rather than at the tip. You get surgery after birth. We could digest that.
So we went back home for two more weeks. We felt sad but thought it would be ok.
At the twenty-week ultrasound, the same doctor was there with a team of five more. Afterward, all they said was that they couldn't see much more. It was still either hypospadias or two very rare genetic defects.
So we did a DNA exome—this is when they take the baby's DNA from the amniocentesis and run a study of every DNA sequence. It usually takes about six months to do it because the test is not mainstream, but we were lucky to have it done in two weeks. We felt we were moving in the right direction.
At our twenty-two weeks ultrasound, we met at the fetal treatment center. I did an MRI, and they checked for everything. At the end of the day, we met with a genetic counselor. They told us that they had found something living on the X chromosome, and no longer believed it was just hypospadias. Our son had a rare genetic defect that prevented him from growing like a little boy because he couldn't process testosterone properly.
My grandmother had five girls and my mom, three. This defect doesn't affect women as much, so no one was ever aware of it or had to find out they were carriers.
We listened to what his life would be like. It's the first time they had diagnosed someone prenatally at UCSF. The doctor had only seen one or two cases in his long career. I probably wouldn't have known about it until I carried him to term. We weren't sure if the baby would make it, and if he did, he would live a very complicated and painful life, made of health issues and invasive surgeries at puberty.
Based on that, we had to make a decision: to carry him to term and see, or to end the pregnancy in the second trimester.
We didn't want him to suffer. And in the unlikely eventuality that he could have had children of his own, I didn't want him to pass the gene.
So we chose to end the pregnancy.
(Family photo)
We received the news on Thursday, and everyone suspected the state of California would issue a shelter in place for the following Monday. I ended up at the hospital on Saturday because my anxiety was unmanageable. I was apprehensive of his birth, and there was a lot of uncertainty surrounding the induction. I called on Monday, and they finally said they'd be able to get me in that Wednesday.
They tried to induce labor in the office with sponges into my cervix, but because of my anatomy, they weren't successful. I was sent to L&D for a spinal tap so they could do the procedure. It should have taken one or two hours but turned into a sixteen-hours ordeal at the hospital. At that point, I just wanted to go into labor.
I was able to go back home on Thursday to rest and hope the induction would work. That same day, we got a call and were told that my husband wouldn't be allowed to come with me to the hospital unless I was in active labor.
That was just the worst news. To think I might have to go back by myself to get more procedures done and possibly deliver my baby on my own... it broke me.
Thankfully my husband spent the day on the phone and was able to get them to agree to sneak us in even if I wasn't in active labor. UCSF has three hospitals, and only one was accepting spouses in the L&D ward. So when the time came, we went in and told them I was ready to deliver.
They usually don't put you on the same floor as other women when they know you're going to lose the baby. They don't want you to have to see and hear healthy newborns when yours has passed, but they couldn't find another room, and we told them it was fine.
I was dilated and ready to birth him. But the same issues as on Wednesday arose: because I have two cervixes, the baby couldn't get out. The doctors said that trying to push would be a danger for myself, for my body, and possibly hurt my ability to have future children.
I really wanted to be awake and present for his birth, but I could not. I was put under, and they birthed my son while I was asleep.
When I woke up, they told me that because of the size of my cervix, there were not able to successfully remove him in one piece.
He had passed, and they said that their medical opinion was that I should not see him.
I was so angry because that's all I wanted—that's all I had left—to see him.
We came to an agreement that they would take pictures and prints of his feet and hands, wrap him in a blanket, and let me hold him.
He was covered, but I got to hold my son.
We spent thirty minutes with him. It was really sad.
The hospital would have given us extra time, but I didn't know what more I could do. There was nothing else left to do.
After a full day, my bleeding had stopped, and I was able to hold a conversation. They told us we could stay with him or go home.
We decided to leave.
That night, I was so out of it from all the drugs. I woke up on Saturday, realizing that not only had I lost my baby, but I was also stuck inside.
When you lose a baby in your second trimester, the same postpartum effects happen. My first week was incredibly painful: my cervix and uterus we shrinking back, and although they gave me pills to make sure my milk wouldn't come, my boobs were still incredibly sore. I was emotional and had to take anxiety medicine, but then I'd sleep too much and feel terrible. Nobody could come, and I didn't want to talk to anyone over Facetime.
My husband had to get back to work (from home) the following Monday. I'm grateful my work gave me six weeks off.
It's hard to try to navigate how to deal with postpartum without your baby, while also grieving his loss and being stuck at home.
Right now, we're just trying to figure out what the next steps are.
Because of the quarantine, his body couldn't be released by the morgue. We're trying to get him cremated, but the IVF clinic needs the baby's tissues first to run more genetic labs alongside my DNA. They have to test the remaining embryos because they can't legally transfer them if there's a known defect. Everything has been postponed because of the pandemic.
I'm trying to take it day by day. I put away my maternity clothes and all of his outfits, too. We were getting ready to paint the nursery, so all that went away. We made arrangements for the mortuary.
I feel bad even going outside for a walk because of the stay at home order. My body is healing, but I can't get a glass of wine with someone or see my parents because of that.
I'm using my time to heal and prepare my body for what's to come in the summer. The plan right now is that they'll test the rest of the embryos. That will take six to eight weeks after they receive his tissue. We're looking at the end of May for those results to come in.
My IVF doctor says I need two periods and to be five to eight weeks postpartum before another transfer. They need to check my lining to make sure I wasn't injured during the surgery. All my appointments post-delivery are over zoom, even with the RE [reproductive endocrinologist].
I've already done all the injections before, so I won't need someone for that. But you still need them for the ultrasound and transfer. My doctor was hopeful that by the end of May or June, I'd be able to get another embryo. I believe CA still allows IVF procedures, although some states say no treatment at all. We'll see. It's a private clinic. They do things differently.
Mentally, I'm exhausted. I'm isolated. There's a lot of ups and downs. I'm feeling hopeful for the future while being stuck in the present. It's odd grieving someone you never knew. It's sad and hard. Isolating in itself. I know my husband says he understands, but... that baby went everywhere with me. He was moving and kicking so much. It's also tough to deal with your postpartum body. My stomach was very big for twenty-three weeks. Now it's in this awkward, squishy phase. I went for a fast walk the other day and started to cramp. It's frustrating to have to go through all these physical symptoms without having anything to show for them. At least when you come back with a newborn, you're happy and in love, and it makes up for the pain.
(Photo by Didi von Boch, “The Window Shot”)
His name was Cole. Cole Joseph.
We called him "Peanut." My husband still does. I call him by his first name.
I'm trying to hold on to the idea that everything happens for a reason. I like to think that I needed to learn that I'm a carrier of a rare genetic defect, so all of Cole's brothers and sisters will be safe and healthy. It's tragic and horrible, and I don't wish it on any mother, but because of it, something beautiful will come out. The embryos that aren't healthy will be donated to science so they can do more research. I'm hopeful that we'll have beautifully healthy children and never have to go through this again.
Yesterday [4/3/2020] had been two weeks since he passed. I'm starting to feel a bit better. My body is beginning to feel like itself.
Going through IVF is hard, but I'm also incredibly grateful for science and technology.
I know a lot of people who don't like to be in the "IVF Club" because they consider it some sort of failure to get pregnant on their own, but I'm so thankful. It's going to allow us to be a family.
I find strength and relief talking about it. I hope it helps other women, so this experience doesn't have to feel so isolating and lonely. Because it's difficult to mourn someone you never met but knew through ultrasounds, kicks, and projections: his birth, bringing him home, the first crawl, food, birthday. You had so many hopes and dreams.
One of my friends is pregnant, and her due date is five days after what would have been mine. I'm grieving that, too, our children playing and growing up together.
Then other people are reaching out, asking if I'm doing ok and when he's supposed to arrive. You find yourself having to announce the sad news over and over again.
But I have hope. And I like to think that we'll have healthy children because of our son.
Yeah. I have hope.