Losing Lily

Almost immediately after we had Oliver, Mark and I knew we wanted another child. It’s not that Oliver wasn’t enough, but we learned how quickly and enormously your heart can grow after having a baby, and we knew we had capacity and desire for even more growth. We also liked the unique challenges and rewards we would face by having two kids, and expected (hoped?) there would be a certain amount of balance forced upon ourselves and Oliver by having to split our resources over two kids rather than allowing ourselves to spoil one fully. Also, as we age, we liked the idea that any decision making our child(ren) may have to make regarding our care wouldn’t fully be on one person, and that once we passed, he wouldn’t lose the entirety of his family.

While we felt emotionally ready straight away, we knew it was medically best to wait at least a year before trying to get pregnant again, allowing my body to heal fully. Also, I was nursing Oliver, and based on multiple complications in my pregnancy with him (namely intermittent bleeding and extreme morning sickness known as “hyperemesis”), I would need to stop nursing before trying to get pregnant or as soon as I became pregnant, and I wasn’t ready to end that journey yet. Initially we were going to wait until Oliver was 1.5 years old, but as we got through the first year and fell even more in love with our little man, we became even more eager to grow our family further. We also knew that it took roughly 9 months from when we started trying to have a baby to become successfully pregnant with Oliver, and wanted to give ourselves a buffer. We decided 2 years would be the closest age gap we were happy with, so we reverse engineered our ‘start date’, and figured then even if it took a little while, they’d hopefully be less than 3 years apart.

Over the summer, Mark had a week off work and we made plans for a ‘staycation’. Lots of outings while still staying at home seems to be more practical with a toddler than road trips or flights, so staycations have become preferable to vacations. We decided to use that week to wean Oliver, since we anticipated the ending of ‘mummy milk’ would be an emotional time for both him and me, and the distractions and added reinforcement from Mark being around 24/7 would be helpful. For Oliver, the first day (or more specifically, the first morning) was a little rough, and beyond that, he was nearly unfazed, which was great. I had mixed emotions before weaning him, but seeing how well he did, I never felt any tinges of regret or guilt, so it worked out well. The physical aspects of weaning were much more… painful… but thankfully that only lasted a few days, and we tried every trick in the book to diminish my milk supply asap. After 15.5 months nursing Oliver, he was suddenly that little bit more independent, and we never looked back.

As it turned out, the week was good for more than just weaning. The very same week – our very first month of trying – I got pregnant. We found out a little less than 2 weeks later, and were beyond joyful. I was so shocked we had managed to get pregnant the very first month, given how long it had taken to get pregnant before my miscarriage and then with Oliver (3 and 4 months, respectively). Mark and I convinced ourselves that after multiple months trying for our previous pregnancies, a miscarriage, and the rough go I had during my pregnancy with Oliver, the universe was letting us have an easier ride this time. My due date was April 12 – 2 weeks after Oliver’s 2 year birthday (and smack dab in the middle of when Oliver was actually born verses when his due date was), putting the kids a near perfect (for us) 2 years apart. We eagerly told our families and many close friends right away, just like we’d done with my previous pregnancies.

Unsurprisingly, I felt nauseated early on. When I was pregnant with Oliver, my naiveté made me brush off any early nausea, and even made me anticipate it would end with the first trimester. This time I knew better, but I also knew which meds and foods helped (and that you can grow a perfectly healthy infant even on a diet mostly consisting of breakfast cereal, In-N-Out burgers, and boxed macaroni and cheese). By week 7, things had gotten pretty rough, even with the regular doses of Diclegis and Zofran. I did remember things got more manageable around 15-16 weeks with Oliver, and anticipated this pregnancy would follow suit, so I forged through with some optimism. Being a stay-at-home mum to a busy toddler made for unique challenges, but thankfully Oliver was going through a keen reading phase, and happily spent many hours sitting on the bed being read to. We also joined the YMCA gym several months back, and Oliver had settled into enjoying the Child Watch program, so when I really needed a break, I could go to the gym to “work out”, drop him at Child Watch to play and be supervised, and have a leisurely walk on the treadmill.

Around 7.5 weeks we had our first ultrasound. Because of my nausea, we were confident we weren’t having another blighted ovum (super early miscarriage). We hired Oliver’s babysitter to watch him for an afternoon, so Mark and I could both attend the ultrasound. Our appointment was flawless – perfectly healthy baby measuring exactly on track and all my checks and blood tests done with no issue. We stopped at Sonic en route home to pick up a cherry limeade and some tater tots (my preferred anti-nausea snack at the time), and happily reported to our babysitter that everything was great with Baby #2.

With Oliver, I had a lot of unexpected bleeding throughout my first trimester – not something one wants to experience ever in pregnancy, but especially not after having just had a miscarriage months before. The silver lining was that we had a lot – and I mean a LOT – of ultrasounds during my pregnancy with him. We had near constant reassurance that he was alive and well. This pregnancy didn’t seem to have the same amount of bleeding. I had some spotting, but I know that’s just my body (thank you, extra vascular uterus), and wasn’t alarmed. I had my usual check up with the OB/GYN 4 weeks after my ultrasound, and continued just trying to survive the hyperemesis while doing my best to look after Oliver. During my check up, the doctor confirmed the baby’s heartbeat was healthy via doppler, and since I was nearly at the end of my first trimester, we shared our exciting pregnancy news on social media.

At 13 weeks, on October 5th, we had our next scheduled ultrasound. We didn’t want to hire a babysitter again, and anticipated the appointment would be just a box-checking exercise like it had been with Oliver, so Mark and Oliver both came to the appointment. Since this is a more detailed ultrasound called the “NT Scan” or “nuchal scan”, it is done at the hospital, so Mark and Oliver explored the hospital halls while I laid on a bed and had jelly poured on my tummy and lots of snaps taken. The baby was measuring a few days ahead, meaning it was a little tall and/or had grown a little more than expected since our ultrasound 6 weeks earlier – just like Oliver had at the same stage. After the ultrasound, the measurements get plugged into a system and combined with the results of a blood test I’d had weeks earlier, and they give you the risks of certain genetic complications. The results are given by a perinatologist in another room, so after the ultrasound, I went back to the waiting room, called Mark so he and Oliver would come back and join me for the results, and then right as they got back, the counselor was ready for us.

While the ultrasound tech was the same one I saw with Oliver, the scheduled perinatologist was different. We sat down, and she had a very serious sounding introduction about how these are not 100%, it’s a screening test, etc. We assumed this was just her usual protocol for introducing results. However, it turned out rather than the expected (for my age) 1:400 chance of Trisomy 21 (Down Syndrome), our baby was currently showing a 1:27 chance, which is a ‘positive screen’ (anything higher than 1:150 is considered positive by the state’s standards). She then started explaining why my results had come back this high – baby’s neck measurement was right at the top end of ‘normal’ and certain hormone markers in my blood were way off. My PAPP-A hormone was in roughly the 1st percentile, indicating my placenta was not functioning well and whether or not Downs was a factor, both the baby and I were at significantly increased risk of lots of complications because of that (stillbirth, pre-term labor, preeclampsia, placental abruption, etc). The perinatologist further discussed our options – doing nothing, having an NIPT screen done (a non-invasive, super advanced test that screens for genetic anomalies using fragments of fetal DNA found in my blood), or having an amniocentesis (an invasive test that involves inserting a large needle into the gestational sac to obtain amniotic fluid; the fluid contains the baby’s skin cells, which they can grow in a lab and test conclusively for genetic anomalies). As we were a positive screen, any option and all genetic counseling would be paid for by the state if we used a specific hospital.

Mark and I felt most comfortable with the NIPT option. We packed up and headed to my OB’s office to have the blood draw done, but there had been some confusion in the planning and it turned out that in order to be covered under the state program, we needed to use the UCSD genetic lab, which would require calling and making an appointment at a different office. We packed up again, I stopped in quickly at Jamba Juice to buy a smoothie, dropped Mark back at work, and drove home crying to myself in the front seat nearly the whole time. Oliver fell asleep on the drive, so when we got home, I laid him on the bed and then snuck off to another room to call UCSD and make an appointment. They were able to see me that day, so Mark left work shortly thereafter. He came home to watch Oliver (rather than dragging our toddler around to more hospitals and appointments) while I went to my appointment and blood test solo. It was a Wednesday, and they said results would be back by the following Wednesday or Thursday depending on which day the blood samples were picked up.

Over the coming days, Mark and I discussed all the “What Ifs”. Between us, our concerns for having a baby with Down Syndrome included the baby’s own quality of life, since there are so many additional medical complications with such a diagnosis, and impacts on ourselves, our marriage, and Oliver (both in the near-term, with our attention necessarily being focused on a baby with substantial health complications, and long-term, with the complications that would arise when Mark and I pass and the then-adult needing care). Over the weekend, I managed to convince myself that the baby was genetically fine, that this was all a scare, and that rather than a Down Syndrome diagnosis, we were simply going to have to worry about that PAPP-A level being so low, and have lots and lots of additional screenings and ultrasounds at the hospital, since this was now a high risk pregnancy.

The following Monday, October 10th, Oliver and I were at Costco, and as we walked back toward the car, my phone rang. I didn’t recognize the number, but saw it was local, and thought it might be UCSD. It was, and they had results. I quickly thought if the results came back faster than expected, it likely wasn’t good. Sure enough, the baby screened positive for Downs again. Rather than the ~4% chance of having Down Syndrome before, the baby now had a >97% chance from this test. Plus, the fact the baby had screened positive on both tests realistically means it was very unlikely to be wrong. I was crushed and shocked simultaneously, but also asked the gender (since NIPT tests can also reveal gender). Baby was a girl. Just like Mark wanted for our second child.

After the call, I texted Mark and asked him to come home early. He was only meant to be at work another hour, but I was in too much shock to process on my own any longer than necessary. He called to ask what was up, and I told him, so he packed up and came home. We talked a lot that night. A lot. Suddenly my initial confidence about ending a pregnancy based on genetic factors was wavering. In the face of choosing to terminate my own daughter, it was much harder. I envisioned scenes in my head about her future, though I quickly realized many of those dreams weren’t her likely future anyway. I then romanticized the idea of being her care taker and advocate, and then remembered that no matter how much I advocated or got her the best medical care, there would still be complications early and often that would impact her quality of life severely. It was so complex and – to put it bluntly – so shitty to be having these thoughts and making these decisions for real.

The next day, I called the genetic counselor back. Even though the diagnosis was near certain, we decided to follow up with an amniocentesis. The additional test would give definitive results and would buy us an extra couple weeks to make peace with our decision. I wasn’t quite far enough along for an amnio, so we scheduled it for the following Tuesday, when I would be measuring 15 weeks. We’d have results within a week or two depending on a few factors.

The following Tuesday, I went to my amnio appointment solo while Mark looked after Oliver again. Throughout the process, I really appreciated how much Oliver loves Mark and how thankful I am that Mark’s employer is flexible and accommodating enough to allow time for all of these unexpected appointments. I went in and met with the genetic counselor, who described the process, then sat briefly in a waiting area. Next, someone else brought me to a procedure room where I had a very detailed ultrasound done. The room was a little cold, but what I remember mostly is that during the ultrasound, Sinead O’Conner’s “Nothing Compares 2 U” was playing on the radio, and I started crying quietly to myself thinking about how appropriate many of the lyrics were for my thoughts about our baby girl. She was so perfect and innocent and I loved seeing her little face on the screen, but I didn’t want a life of pain and frustration for her, and it was the most awful sinking feeling while laying there and processing all these thoughts.

After the ultrasound, I sat in the room staring at a print out of Lily’s facial profile. We still loved that name from when I was pregnant with Oliver, so we named our little girl Lily Elizabeth. In addition to being inspired by my paternal grandmother, Lilian, Lily also happens to be my favorite flower. I liked the idea that every time we would buy lilies (which is often), we would have a little piece of her in our house.

After what seemed like a long time, the perinatologist came in. In the interim, she had been reviewing my ultrasound extensively. She had a brief, but serious chat with me regarding what I knew about the diagnosis up to this point. I got the feeling she was trying to test the waters about whether I knew the diagnosis was relatively certain, which I did. She then revealed some added complications from the ultrasound. Lily had a hole in her heart and blood in her bowls – both additional markers for Downs. The hole might heal itself in time, but more likely, she’d need heart surgery after birth. Further, her growth had slowed substantially. Whereas she was measuring several days ahead just a couple weeks earlier, she now measured several days behind, so her growth had slowed to roughly half the expected rate. I wasn’t fully surprised, since I knew the complications with my placenta and the PAPP-A measurement, but I was shocked how rapidly that issue had set in. It was, of course, yet another indicator for Downs, too.

Once we reviewed the ultrasound results, she prepped me for the amniocentesis. The needle wasn’t quite as long as I expected. It wasn’t painful, per se, just a bit uncomfortable and awkward. She had to go in twice; the needle got caught on the amniotic sac on the first attempt, so she couldn’t get out any fluid. I guess that’s the problem doing an amnio so early – the sac isn’t yet rigid enough to be able to puncture without risk of poking the baby. The second attempt was no problem though – she got out exactly what she needed, they wiped the betadine off my belly, and I was good to go. There is an elevated risk of miscarriage after an amniocentesis, so I was on strict orders to take it easy and be lazy for a couple days. Mark worked from home to help look after Oliver in the interim.

The next day, I had a regularly scheduled appointment with my regular OB/GYN. We discussed the amniocentesis, and he had seen the ultrasounds from the previous day. We talked about her growth, in particular, and the fact that it had slowed so early and dramatically that she would almost certainly not make it to term. Instead, she would likely continue to effectively starve to death in utero and pass before becoming viable. Even if she somehow made it long enough to be viable, the added problems from growth issues would only compound medical complications inherent from Down Syndrome.

Friday morning I got a call from a number I was starting to recognize. It was UCSD again. The results from the amnio were in. Another quick result, another positive. While it’s possible these results could have had a false negative, a false positive wasn’t possible, so we knew it was fact now. It had only been 2 1/2 weeks since we first suspected Down Syndrome, and here we were with a definitive answer. Before my amnio, I discussed with the counselor that we planned to terminate pending a positive result. We discussed the two different options for a termination – either a surgical procedure known as a Dilation & Evacuation (“D&E”) or induced labor. I preferred the D&E route for logistical and emotional reasons, and knowing that, she had already checked with the hospital regarding scheduling when she called with my results. She confirmed my plan was still to terminate, and then told me the hospital could accommodate me for the procedure the following Monday & Tuesday, if I wanted.

I called Mark with the results and told him he’d need to take time off the following week. The D&E is a two-day procedure, which would mean he’d have to look after Oliver both those days, but that I would also need some time to recover. He wound up taking Monday to Wednesday off, working from home Thursday (just in case), and already having Friday off, because his parents had planned a visit to San Diego months earlier.

We spent the weekend enjoying a lot of quality family time. Lily might only have a few days left, but she was going to know a lifetime of love in those days. I took as much anti-nausea medication as I was allowed to improve my mood as much as possible, and we talked to and held my belly lots. It was good that we’d had a couple weeks to grieve in advance, so we weren’t so shocked by that point, and could instead focus on loving our perfect little girl.

Monday morning, I drove to the hospital. I went alone again, so Mark could stay with Oliver and we could try to keep his schedule as normal as possible. I was called into the appointment room quickly, and the nurse started going over paperwork with me. As soon as I saw “second trimester abortion” at the top of one form, I lost it crying. The nurse was wonderful. She got me tissues and talked to me and comforted me. When I stopped sobbing, we carried on. I cried on and off, but nothing as hard as I had initially. I read a lot about the procedure online, so I knew what to expect. That day, they would insert laminaria, which would start my dilation process. I knew it would be painful, and that there would be no turning back thereafter. I asked about what they could do to stop Lily’s heart before the procedure, so she wouldn’t be ‘sucked out alive’. If you’re later in your pregnancy, they can inject something into the amniotic sac to let the baby pass peacefully, but there are risks involved, so they don’t generally do that at 16 weeks, like I was, since the baby can’t yet feel pain anyway. We agreed instead that once I was dilated, they would cut the umbilical cord, so she would pass quickly and painlessly before they worked on removing her. We also discussed my desire to get Lily’s footprints, if possible.

While they inserted the laminaria, they injected a local anesthetic, so I wasn’t initially in pain. Afterward, I met with a social worker to discuss my emotional state and our plans for the future regarding telling people (or not) and family planning. Once done there, I went downstairs to have a blood test done and pick up some prescription strength painkillers before driving home. As the afternoon went on, I was especially thankful for those pills. I knew from birthing Oliver that dilation was painful, and having it done medically rather than naturally is no less so. I tried sticking to the ibuprofen first, but as the afternoon went on, I reached for the heavier stuff, which thankfully made the pain and cramping manageable. That night we went to our favorite local Italian restaurant for our “last supper” as a family. We indulged in pizza and salad and gelato, though my hyperemesis was still going strong, so it wasn’t the most enjoyable meal.

Tuesday morning, I had to be at the hospital early. We didn’t want to wake Oliver at 5:30am, so my brother picked me up and drove me to the hospital while Mark stayed at home. Once I checked in, I sat in the outpatient surgery waiting room for a while. It turned out some of the consent paperwork I’d signed the day before hadn’t gotten scanned into the system, so I had to re-sign a few bits. Eventually a nurse came to get me, and brought me in to do all my pre-op procedures. As she sent me into the changing room to get out of my clothes and into a hospital gown, I started sobbing again. She told me to take as much time as I needed, so I did. I cried a bit before getting changed and coming back out. Next, she inserted my IV and took another blood sample, and while she did, we talked about where she was from. I noticed her English accent, so mentioned my husband and dad being English and my previous time spent living in London, and it was a nice distraction. I thought it was somewhat fitting that my nurse when delivering Oliver was Scottish and here while ‘delivering’ Lily, I had an English nurse. Once I was prepped, I sat waiting to be taken to the surgical waiting room. Eventually someone turned up with a wheelchair to escort me to a hospital bed, where I laid waiting for my surgeon and anesthesiologist. As I laid there, I suddenly realized I never removed my bra, so I had to call over a nurse to close the curtain around me while I removed it and then she put it with the rest of my clothes. My silly, absentminded move provided some personal comedic relief and a time killer.

Eventually the anesthesiologist came to greet me and discuss my previous experiences with general anesthesia and the side effects I had (mostly nausea and vomiting), which he’d try to minimize for me. He was great. The surgeon came to talk to me, too. We reiterated my desire to have the umbilical cord cut before continuing the procedure and also to get footprints if possible. Within a few minutes, they were wheeling me off to the operating room, and I was unconscious before we even got there. I woke up in the post-operative care unit with a nurse telling me everything went well. The surgeon came by shortly thereafter saying there were no complications, everything went well, and handing me a small envelope with a card that had Lily’s footprints inside. Admittedly I was still probably benefitting from the anesthesia and other meds, but I felt good physically. I wasn’t nauseated for the first time in weeks. Being a celiac, most of the usual post-op snacks they offer weren’t an option, but they did bring me some jello and apple juice, which tasted divine. I laid there relaxing and reflecting and observing all the other patients around me while waiting for my meds to wear off fully and waiting until it was time for Mark and Oliver to come pick me up. I knew I’d be there a little bit, as my surgery was ending just before Oliver’s nap time, and we wanted to let him nap at home before Mark drove them both to the hospital to collect me.

By the time I went home, I felt like the anesthesia had worn off completely. I had a small dose of ibuprofen at the hospital, just in case any cramping set in, but when Mark and Oliver arrived, I felt fine. Just like when I’d given birth to Oliver, I felt great as soon as I was no longer pregnant. No nausea or heartburn or physical side effects. Unsurprisingly, it turns out cleaning is my grief language. I spent the afternoon doing garden care and some tidying in the house that had been neglected over the past several weeks while I was constantly sick from hyperemesis and emotionally spent from all the diagnostic process and grief of learning about Lily’s health. The next day I scrubbed the house top to bottom, scouring the kitchen, wiping down all the cabinets, cleaning all the baseboards throughout the house. It was a nice way to focus my energy while letting my mind run a million miles a minute continuing to process everything that had happened over the preceding 3 weeks. In just 3 weeks, our lives had changed dramatically and permanently. We had endured what I expect and hope to be the most heartbreaking and difficult experience of our lives.

Because we announced my pregnancy on social media, we knew we needed to share the loss, too. There are only so many times you can tolerate having to saying your daughter passed at 16 weeks, so we figured it better to announce widely at once than to field questions in the coming months about how the pregnancy was going. While we knew in our heart of hearts we made the right decision for our family, we also know that ‘choosing’ to terminate a pregnancy is an incredibly controversial decision. I don’t expect to change anyone’s mind about their thoughts on abortion, particularly late term abortions. While Mark and I are not religious (despite my Catholic upbringing and his attending an Anglican primary school) and have always been “pro-choice”, I fully understand and respect many of the reasons many people morally oppose abortion. In theory, pro-life is a nice idea, but in practice, it’s much more complicated, especially when there are compounding medical issues and you can’t truly put your heart into the idea of “praying for healing and a miracle”. That said, I also didn’t want to be a martyr for the cause in the middle of processing my own grief and loss, so we opted to keep the details private aside from a handful of very close friends and family,  who supported us wholeheartedly. One of my best friends reassured me that “God understands”, and I’d like to believe that whatever higher power exists is able to show his children the same compassion we have shown our very much wanted, very much loved daughter in this situation.

Unsurprisingly, the fact we have been keeping our “secret” close to our hearts has meant the healing process is incredibly isolating. Even among those people who knew all the details, we have found some more comforting than others. Mostly, Mark and I have been thankful for each other in this process. We are lucky to have such fundamental shared values that we could support each other and have productive conversations before, during, and after the termination. We both still very much consider and will always treat Lily as our daughter, even though we never got to hold her, bring her home, watch her big brother read her books and show her his trains, or spend a lifetime watching her grow and learn and thrive. To help us manage our own grief, we chose to have her cremated. Her ashes are now in a small box in our living room while we figure out what we’d most like to do with them. Currently, we think we’ll eventually take a family vacation to Hawaii or New Zealand – our two most favorite and memorable vacation spots from before children – and spread them there. In time, that may change, but we are happy knowing that for now, she is at home with us.

We do still hope to have another child. I always said I would like “2 or 3” children, and I guess whether or not my next pregnancy is successful, I will have fulfilled that dream. We plan to have just one more pregnancy, and however that ends will determine how many kids we have. It’s too much physically and emotionally to be going through this process many more times, so one more shot feels appropriate. If it happens sooner than later, the kids will still be close in age, but otherwise, we don’t want to be in this rollercoaster indefinitely, especially since my hyperemesis and all the testing and appointments affect how much attention and normalcy Oliver experiences day-to-day. That said, I would take an extra 9 months of hyperemesis and appointments if it meant we could bring back Lily and make her healthy. This process has been more humbling than I could ever fully put into words, and has renewed my appreciation for how healthy Oliver has been, even in spite of his premature arrival, and also Mark’s and my own health. Thankfully, my doctor says in his many years of doing this, he has never seen someone have two separate trisomy pregnancies. Hopefully my next pregnancy is healthy and viable and will just be fraught with anxiety like my pregnancy with Oliver was after having had a blighted ovum. Because I have now had a trisomy-positive pregnancy, my health insurance will cover me getting an NIPT test done at 10 weeks in my next pregnancy, even though I am younger than the usual age they start testing by default. So by 11 weeks, I should know the gender and genetic health of our next baby. That, of course, assumes no complications that arise even earlier, but rather than focusing on the risks, we are choosing to remain positive and optimistic and look forward to our family of 5 rather than to the loss of our second baby.

Lily Elizabeth Osborn – we love you so much. You will be loved and remembered and honored forever and I am so thankful for the love and compassion you opened my heart to.