Oligohydramnios: Chandler's Journey

Hey, everyone! I just wanted to pop on the blog and give an update to where we are with things since admission this past Wednesday. So far, so good. There haven’t really been any changes with the baby or my diagnosis at all. I have finished my first round of steroids which started on Thursday to kickstart Chandler’s lung development. I have also been on an IV antibiotic every six hours since then as well, and have just transitioned to oral antibiotics as of this morning which will span a total of five days. I have my vitals taken every six hours, along with my blood sugar checked before and after every meal since the steroids can cause high blood sugars – I will be so excited for when that part is over!

Starting yesterday Chandler is observed daily with a non-stress test (a.k.a. NST) where they monitor her heart rate and movement for 30m-1hr, and also check for any contractions. So far, so good. She doesn’t like being on the monitors and anytime there’s any pushing on my belly she will move away which is very sassy and cute, but not so cute for the nurses who have to work twice as hard to keep her on the monitor.

My mental health has been hit and miss so far however things are getting easier. The first two days (Wednesday and Thursday) were hard for me to be alone, and then John’s birthday was yesterday which I was also really sorry to not being able to spend with him. The nurses here at OHSU are all so incredibly nice and will spend time chatting with me if they aren’t too busy with their work. I have done my fair share of watching all the reality trash TV that I have ever dreamt of watching, and I also have some books to read as well. John brought me some flowers this morning which I LOVE because they’re beautiful to look at and make my room smell really nice.

Outside of what I just shared there aren’t any further updates or changes. The plan in place is still to have baby Chandler delivered at or before 34 weeks gestation, however this will all depend on how she is doing in utero. We got to speak with the NICU team again yesterday since our initial consultation with them last week. We got some positive news that Chandler has “graduated” to the 500g club which basically means she is now big enough where the NICU is confident they will be able to care for her when she is born. That was a big relief to us because when she was only 11oz, one of the concerns was them not having small enough instruments to take care of her with. We did still have to have some difficult conversations surrounding resuscitation and quality of life, but hopefully as we move forward and find out more about her lungs those conversations can start to change.

I will have an MRI in the next few weeks to look at her lung development and will continue to have the same weekly ultrasounds that I had when I would come in for the weekly visits with the fetal therapy team. Thanks for everyone checking in on me and for all of the love and support. I will be back on the blog soon for another update in a couple of days.

The day John and I were waiting for has finally come … I have been admitted! I say that with a lot of mixed emotions – I would much rather be home for my own comfort, however I know being at the hospital is the best place for Chandler and the care I need to ensure she has the best chance at survival. Our morning started like our typical Wednesday mornings have for the past five weeks – we came in for our weekly ultrasound at 7:30am and to meet with our doctor. During the ultrasound we found out that our baby is now at 492g (1lb1oz) which is really exciting because two weeks ago when she was measured last she was only 11oz. The fetal radiologist also came in to perform a check on my placenta which found that the placenta isn’t performing as well as they would like to see, however our main doctor didn’t seem overtly concerned with that.

Around 10:45, John and I walked over to L&D triage where I had a non-stress test to see how baby was moving (she looked great as usual) and to have an IV put in for my hospital stay. I can’t say I enjoyed the IV placement and hope the one they gave me today will last throughout my entire visit. Eventually, we were sent to the mother baby unit here at OHSU where I will be staying for an undetermined amount of time. I received the first steroid shot to kick start lung development which was very painful, and I’m lucky enough to get a second one tomorrow! Tonight or tomorrow they will start the round of antibiotics as well. At this time the diagnosis is almost certain to be PPROM, so we are looking to reduce labor and infection so Chandler can stay in the womb for as long as possible.

The room here at OHSU is really nice – I have a great view of the campus and the mountains here on the 13th floor. John brought me my laptop and I have all the creature comforts to hopefully keep myself as engaged and entertained as possible. Starting on Friday, Chandler will be monitored daily via non-stress tests to make sure she’s still thriving and doing well. One concern (outside of our ongoing concern of lung development) is her low fluid and small size; stillbirth was a concern and partly why our doctor encouraged admission today.

I don’t really have any other updates to share right now. I miss John and our dogs already and it’s hard to think about not sleeping in my own bed or seeing my dogs for up to 10+ weeks from now, but I know this is the best place for me to be for the health of our daughter. Now that I’m admitted and will have a lot more going on, I’ll probably be updating the blog more frequently as we have updates. Thanks to everyone for following, sending your messages of love and support, and thank you to the Weaver family for the flowers. Signing off for now…

It’s been a very long day – we started at 8:00am and as I write this at 5:00pm we just now finally wrapped up our medical visits for the day. So far John and I are both feeling cautiously hopeful and optimistic, however we did have a bit of a scare today that I will go into more detail about later.

This morning we went in for our second follow up ultrasound with the Fetal Therapy clinic. I didn’t get much sleep last night but the night before our appointments I don’t usually sleep well so that’s become an expected experience. Our scan today didn’t reveal a ton of changes other than my fluid is lower than it was last week by ~1cm. This sounds concerning however because the fluid is already so low, the tech who performed the scan stated she has fluid in her stomach and bladder and that’s likely where the difference is – so ultimately no loss of fluid overall however no gain of fluid either. We got to see her face and saw her moving around – in the past week her movement has increased significantly and she was busy protesting during the ultrasound today. It sounds like we have a feisty little girl on our hands which we are grateful for.

After the scan with the tech, the fetal radiologist came in to confirm what was seen on the scan and offered herself up for questions. There were some burning questions we had from the week prior that have been on my mind – such as the deformities seen in the scan that was mentioned to us last week. When we talked to the doctor about this today it was explained further that the only deformity they are seeing right now isn’t really a deformity but is an abnormal skull shape. This is explained due to the pressure of low fluid which has caused her head to push against my uterus, however this is something that is able to be corrected after birth. Not to sound shallow because we will love our child no matter what, but I also wanted to better understand if they were seeing abnormalities with her hands/feet and/or her face. It isn’t just necessarily about how she might look at birth, but also there’s concern of contractures, club feet, or hands that may not operate as hands should which can impact her quality of life and future development. To our relief they are not seeing anything unusual with anything else on our baby. Wow! What a relief that is to know that although she has had some complications, she is developing “normally”.

After the scan we had the opportunity to meet with our doctor who has been overseeing our care thus far. She is hesitant to be overly optimistic just because in reality you aren’t seen by her team when things are going great, however she did indicate our baby is very stable which is promising. We met with the palliative care team to better understand the level of support they provide families of children who may have complications at birth, and also were set up for a NICU consult for later in the day. We have a plan in place for next week’s appointment where depending on Chandler’s growth (they measure this biweekly), I may be admitted for monitoring and so antibiotics and steroids can be administered to ensure I don’t go into labor early, and to help with lung development.

We made it home for lunch, but not long after I noticed that I had some wetness in my underwear which I was worried was amniotic fluid. A call to the doctor sent us back to OHSU again where I was admitted to L&D triage to have an exam to confirm if it was a fluid leak. Fortunately, the fluid was found to NOT be amniotic fluid so we are back home again. The non-stress test done while waiting for the results from the exam was really promising and baby Chandler got to show off again how strong and feisty she is with how much movement she was showing (our midwife even commented on how surprised she was to see so much activity at this gestational age).

Once we got home, we had a consult with the NICU team. It was kind of a mixed bag of emotions having the conversation with the neonatologist – partly, we both feel so insanely appreciative and grateful we have made it to the point where we have a need to meet with this team. On the other hand, we are still not at a gestational age where our baby has a strong chance at survival. Every day and week I am pregnant we are one step closer to having a healthy child. Ultimately, what we have understood from this conversation is 28-30 weeks is really the true minimum for most optimal chances of survival, however babies can still survive and thrive if they are born sooner but having such a small baby already our circumstances are a little different.

In summary, our doctor still is thinking I have PPROM and a slow leak of fluid which is contributing to the oligohydramnios diagnosis. The fluid is stable but not increasing even though we know Chandler is consuming fluid and peeing which supports her theory. Although having a fluid leak is never a good thing, we have been able to almost definitively rule out kidney or other major organ problems, so that is amazing news we are so happy for. Next week depending on how much Chandler has grown since last week will determine if I am admitted to the hospital. If I am not admitted, we are prepared for admission at any stage and will be taking it week-by-week.

Overall, we have a lot to be grateful for and we are. For the first time since receiving this diagnosis at 19+5, we feel like there’s a chance we will have a baby to bring home. Please continue to send us your prayers, positive thoughts, and positive vibes. We are grateful for all of the people in our lives who are so invested in our journey and are cheering baby Chandler on. More updates to come next week…

Today we went in for our weekly follow up ultrasound after our initial intake with the Fetal Therapy Clinic last week. Neither John or I slept very soundly last night – we were both worried about what we might hear at today’s scan. Our scan was at 8:30am followed by an appointment with one of the two doctors who head the fetal therapy team.

Our scan seemed to go well from what we could see. My fluid has increased from 1.70cm last week to 2.68cm this week which felt very exciting and promising. We were able to see fluid in baby’s stomach as well as her bladder, which indicates she is ingesting fluid which is what we want to see. The more fluid she ingests the more likely she will have developed lungs at birth. One concern we had was her growth as we knew at our last appointment that she was in the 14th percentile and above the IUGR range, but not by much – anything <10th percentile is considered possible IUGR.

When we met with the doctor after the scan, we learned that although the fluid increase was a positive, our prognosis overall was looking more grim than the week prior. Our baby’s growth was not ideal and she has only gained 56g since our last measurement date which was on 2/21 – essentially she is below the 3rd percentile and we have the IUGR and possible SGA diagnosis back on the table. Additionally, her head appears to be dolichocephalous in nature and some possible deformities are being seen in the ultrasound. It’s hard to know how accurate this information is because ultrasounds are a difficult tool to rely upon, especially when dealing with low fluid.

So what is next?

We are choosing to continue the pregnancy and have another scan scheduled for next Wednesday. We are very nervous for next week as we are not just having the ultrasound and meeting with our doctor, but we also are meeting with the Bridges team at OHSU who are the neonatal palliative care team. Palliative care for infants and children doesn’t always mean the same that it does for adults – what comes to mind for most people are things like hospice care or end of life care, however it does freak both of us out. We are hoping we have the Bridges team involved for ongoing NICU care and not to help us navigate comfort care which is not the outcome we are hoping for.

As of now we aren’t confirmed with IUGR and we aren’t confirmed with SGA – SGA is defined as babies whose birthweights are below the 10th percentile for their gestational age. What is confusing for us is we don’t have a defined reason as to why this is happening. So far, testing has supported a healthy placenta, I don’t have gestational diabetes or high blood pressure, and there is no known cause for the oligohydramnios outside of fetal anomaly or possible infection which remains undetermined. Fortunately, my results for CMV came back as immune, meaning it is not relevant to this pregnancy. It has been posed that our baby could have a rare genetic condition however due to the low amniotic fluid we aren’t safely able to draw fluid for an amniocentesis to make that determination.

For now we will continue to ride this out. I’m staying mostly off of my feet, drinking lots of fluid, and taking care of myself. We are crossing our fingers for some positive news next week.

It was a long and excruciating 10 days, but yesterday we finally had our intake appointment with the Fetal Therapy Team to better understand what the chances of survival are for our baby. Our day was long and started extremely early [7:30am], and I don’t think either of us really got much sleep the night before. Due to how much was going on, I will list each appointment and what the findings were below and then the overall diagnosis/prognosis.

Ultrasound with fetal radiologist: We started our morning with a 90 minute ultrasound performed by a fetal radiologist. The intent behind this ultrasound was to continue to look for the organs that were unable to be captured at our anatomy scan due to the low fluid. Some positive outcomes with this ultrasound is my fluid levels have risen from 1.50cm to 1.70cm, which could be a difference of who was using the tool or it could mean that my fluid has gone up – either way, it is positive news. Our baby’s kidneys were also able to be seen again and determined they looked healthy – we were told sometimes with oligohydramnios the kidneys can be damaged, have cysts, or not be present at all – so this was also a huge relief. The radiologist spent a lot of time looking at my placenta and the blood flow with the cord, as well as looking at the blood flow in our baby. Her findings there were also positive. Our baby’s bladder was unable to be located during this scan, however we know her bladder was located at the scan previously and it had fluid in it which means our baby is consuming fluid in utero and is emptying her bladder – yet another positive. Lastly, the previous diagnosis of microcephaly and head size being measured at 1st percentile/body at 40th percentile was found to be incorrect. Although our baby is small, she is measuring in the 14th percentile which is also good. This means at this time she does not have IUGR [intrauterine growth restriction], which is also positive because this is another complication which we do not need on top of what is already going on. The radiologist was extremely informative and although she acknowledged we weren’t meeting each other under the best of circumstances, she provided us with a lot of very valuable information which gave us peace of mind. We were able to learn that our baby has kidneys and a bladder, they appear to be functional, and renal failure at birth/dialysis and the need for a kidney transplant are very unlikely in our case.

Fetal Echocardiogram: Our next stop was going to Doernbecher Children’s Hospital (connected to OHSU) to have a fetal echocardiogram performed. This is not due to any concerns that came up in our scans but is a standard practice in the fetal therapy program to rule out potential heart issues. The echocardiogram was performed by a pediatric cardiologist. We were advised that our baby’s heart is very healthy, strong, and looks great. This was a relief that we don’t have any heart conditions at this time in addition to the other concerns we are facing.

Review with perinatologist/geneticist/genetic counselor: Lastly, we met with a genetic counselor and a perinatologist who specializes in fetal abnormalities. Our meeting with the genetic counselor was really brief because we already had carrier screening testing and NIPT done previously. She informed us there was nothing that would indicate any genetic or chromosomal abnormality causing the oligohydramnios. Her only recommendation was to have me tested for CMV due to echogenic bowels that were seen on our ultrasound earlier in the day. CMV is very unlikely however it was recommended that we rule it out since there’s still a lot of uncertainty as to why my fluid is low. That wrapped it up with our time with the genetic counselor, however she will still be part of our team moving forward so we may see her again.

Next, the perinatologist/MFM/geneticist [she’s basically a super human] came in to go over our entire medical file with us. She reviewed our medical records from the start of my pregnancy through the tests and scans done that day to try to better understand what our baby’s prognosis was, what the cause for the oligohydramnios is, and what the best care plan is moving forward.

To start, she informed us that she does not think our baby has a kidney or bladder issue and does not think our baby will have renal failure, need dialysis, or a kidney transplant after birth. This was a great relief as this was one of the things brought to us after our anatomy scan, and one of the possible causes for oligohydramnios. The reason this can be a cause of oligohydramnios is prior to 20 weeks gestation, the placenta makes all of the amniotic fluid. Then baby’s kidneys take over the production of fluid by them consuming the fluid in utero and peeing out more fluid, thus getting baby’s fluid to a healthy level which is typically 12cm-15cm. John and I were both really glad to be able to mentally cross this off of our list of worries for now and eliminate this as a cause. She also told us that the kidneys appeared to be functioning, shared the information about the prior bladder fluid activity, and the tissue of the kidneys looking healthy.

Second, she was able to share that most likely my placenta being a problem could also be eliminated. The ultrasound performed by the fetal radiologist was able to determine that my placenta has good blood flow to the baby, and the fact that she was measuring in the 14th percentile meant she wasn’t suffering from IUGR [the threshold for this was anything below 10th percentile], which at this stage of pregnancy would be due to a placental insufficiency. This was also a great relief because I don’t know if there is a medical way to resolve placental insufficiency so having that also off the list of possibilities was a relief. We know our baby is receiving adequate nutrients and she is growing, just at a slower rate than what is typical. She did bring up the CMV concern that was shared by the genetic counselor, and recommended that I get tested for that to rule it out also.

Third, she discussed with us the last likely reason I have low fluid which is called PPROM [pre-term premature rupture of membranes]. This possible diagnosis still is not great, however it is the best of the three possible outcomes thus far. The biggest concern we have right now with this as our diagnosis is will our baby be able to breathe at birth? Low fluid in utero limits the baby’s ability to grow their lung tissue because lung tissue is formed when babies “breathe in” their amniotic fluid, which they then pee out, rinse and repeat. If our baby has not been exposed to enough amniotic fluid or does not have the opportunity to be exposed to what she needs, she may be born with pulmonary hypoplasia, which can be fatal. At this stage it is too early for us to know what her chances are or what the risks are, so we will need to monitor my fluid levels with further scans and eventually do an MRI where her lung tissue can be evaluated. Outside of lung issues, we were also informed that our baby could be born with Potter’s characteristics, cerebral palsy, or other deformities from the lack of fluid. To us although these are not ideal, we do not feel this is reason enough for us to terminate our pregnancy based on a “what if” that no one can answer.

So when did PPROM happen and what happens next?

We honestly have no idea when PPROM happened and it is still not with 100% certainty that is what the cause is. When I went to the L&D with my contractions a speculum exam was done, however there was not pooling of fluid which is what is normally seen with PPROM. The doctor did not test the blood or the discharge to see if it was amniotic fluid, however our doctor advised us that because there was blood present the findings would not have been accurate anyways. The biggest mystery is why an ultrasound wasn’t performed which would have helped us know what the fluid levels were at that time. Another speculum exam was done the day of our anatomy scan and that one was conclusive in its findings that there was no amniotic fluid present. The last way to definitively make the determination as to whether this is really PPROM is what is called an amniotic dye test. In an amniotic dye test, a needle is inserted into the uterus and dye is administered into the fluid. A tampon is then placed for several hours to see if dye is collected. We opted out of this procedure at this time due to the risks of it triggering preterm labor and we are not yet at viability but we will revisit this at a later date.

What happens next?

My prenatal care is being handled by the fetal therapy team at least until I hit 24 weeks gestation. I will be observed with weekly ultrasounds to continue to monitor the health of the baby as well as my fluid levels. There are times when membranes can reseal themselves and my fluid may go back up, which is the best case scenario. At 24 weeks [hoping I make it that far], I will likely be admitted to administer steroids which help baby’s lungs develop and for possible hospital bed rest however this is all very much dependent on how the weekly scans go. From 24 weeks on, my care will more than likely be transferred to the MFM team at OHSU through the end of my pregnancy and if we continue to see improvements I will likely be induced by 36 weeks.

So for now I am staying off of my feet as much as possible, hydrating and taking care of myself, and keeping a positive mindset. Every morning I wake up is a morning I am more pregnant than I was the day before, and one more day where our baby can continue to grow and thrive where she should be at this gestational age. I will continue to update this blog as we meet with our team and get more information.

It feels like a lifetime ago that we found out about our oligohydramnios diagnosis, but as I write this blog post it was really less than two weeks ago. I feel it’s important to share our pregnancy journey, how we got to this point, and what we did along the way. It’s a bit cathartic for me to write out what lead up to the worst day of my life. In my own Google journey over the last two weeks, stories of pregnancies with my same diagnosis that resulted in a healthy baby have provided me with hope, and stories of babies who didn’t make it kept me grounded in reality, but both the happy and sad outcomes made me feel less alone. I’m hoping this blog someday will be found by another family going through a similar experience and provide them the hope and comfort I was so desperately seeking.

In October 2022, my partner John, and I found out we were expecting. It came as a bit of a shock as it was our first cycle of actually “trying” to get pregnant, however we were both overcome with joy nonetheless. We elected to receive all of our pregnancy care at OHSU teaching hospital local to where we live in Portland, OR. At our first appointment we found out our due date was July 13, 2023, and our pregnancy looked extremely healthy and was classified as “low-risk”. We advised our OB/GYN that we wanted to explore options of NIPT [non-invasive prenatal testing] testing so we would be prepared to ensure we were able to have as healthy of a pregnancy and baby as possible.

At 13+5 we had our second ultrasound which was the NT [nuchal translucency] scan related to the NIPT testing. The ultrasound was great, my fluid levels were normal, and we had amazing photos of our baby including a little wave of a hand. We also decided to opt for genetic carrier screening in addition to the NIPT to make sure neither my partner nor I had any genetic abnormalities we were unknowingly passing on to our baby. Our NIPT test and carrier screening both came back with flying colors and we found out we were having a baby girl! Immediately, I couldn’t stop myself from shopping for everything pink and bows. We started discussing names, nursery themes, and planning our future with our baby.

My pregnancy continued on as normal until I reached 19+2, when I started experiencing some weird pains which I assumed was round ligament pain I had read all about. I woke up that morning feeling a bit off but figured what I was experiencing was fine and continued on with my day. By that night, I was experiencing extremely painful contractions which were timed which made me worry. I called our hospital’s L&D to find out if I should come in, and was advised it is more than likely Braxton Hick’s, however if I have any fluid leaking or blood to call back. Moments after hanging up the phone, I went and used the bathroom and I noticed blood. After calling back to L&D, we were instructed to come in right away. We made the drive from our home in Oregon City to OHSU to see what was going on.

When I arrived, we were placed in a L&D triage room and waited for the nurse and on-call OB/GYN to come see us. My vitals all looked normal, however due to the contractions I was experiencing the doctor wanted to do a speculum exam to measure my cervix. My cervix measured long at 5cm and there was no fluid that could be identified at that time. After locating baby’s heartbeat with the Doppler, I was sent home with instructions to come back if contractions worsened or I had continued fluid/blood loss. I continued experiencing contractions at home for the next three days up until my anatomy scan that was the following Tuesday. To this day the doctors on our care team still don’t understand why the doctor on staff didn’t do an ultrasound, because knowing what my fluid level was at that time would be very beneficial knowing what we know now.

Three days later at 19+5, John and I went back to the hospital for my routine 20 week anatomy scan. We were both really excited to see our little girl again and were anxious to be told how perfect and healthy she was, as well as get those adorable side profile pictures. Unfortunately, that is not what happened. What started out as a normal and routine ultrasound ended with our tech leaving the room and advising a doctor would be in shortly. John and I were kind of confused as to if this was normal or not and waited. Then a doctor came in and sat next to me on the ultrasound bed and told me we were being sent to L&D because our baby has oligohydramnios, which is extremely low fluid. I was in a state of shock and didn’t know what this meant – was my baby going to live?

John and I walked over to L&D as quickly as we could. I felt like on the walk over I was going to hyperventilate and couldn’t get there fast enough. We had just been to L&D a few days prior and how could it be we were here again and this early? When we got to the nurse’s station I was so hysterical…all I could get out was, “We were sent here from our ultrasound because there is something wrong with my baby.” John then took over and explained who we were, why we were there, and we were then placed in delivery room 8 (probably a detail I will never forget). All I could think about is why was I in a delivery room when I’m only halfway through my pregnancy? I sat on the bed and our nurse came in to introduce herself and we waited on the doctors to come and tell us what was next. Directly across from the bed I was sitting in was the warmer they use when babies are born – I kept looking at it and thinking “why is that in here when I’m not going home with a baby today”.

Eventually two perinatologists [also commonly referred to as Maternal Fetal Medicine doctors, or MFM] came in to our room to tell us more about what was going on. I was told at that moment I have oligohydramnios, which means my amniotic fluid is extremely low, measuring in my case at 1.5cm. Oligohydramnios classifies fluid measuring <5cm, so at 1.5cm not only was my fluid low, it was almost non-existent [referred to as anhydramnios]. This condition is very rare and is seen in only ~4% of pregnancies. We were then told the prognosis for our baby was grim at best and with low fluid she may be born with renal failure, non-functioning kidneys, pulmonary hypoplasia [where baby’s lungs have not developed enough to breathe on their own], and microcephaly. The ultrasound measured our baby’s limbs in the 40th percentile and her head in the 1st percentile, and she was only 9oz which was behind for her gestational age. The doctors started to talk to us next about termination options and reinforced that in the state of Oregon terminations are legal through the third trimester of pregnancy. We were told about our options being a D&E [I won’t go into detail on this one due to how morbid it is] and termination by forced induction [where the baby’s heart rate is stopped with an injection similar to what is used to euthanize animals and then labor is induced following].

Sitting in this hospital bed hearing what we thought were our only options for our baby was heartbreaking to say the least. I could barely look at John because to see the pain on his face was something I could hardly bear. Our OB/GYN then came in and hugged us both and told us how sorry she was that we were in this position. All three of the doctors and the nurse stood staring at us waiting on us to make our decision as to when we wanted to start this process, and if I wanted to have my baby removed from my uterus in pieces or if my preference was to give birth to a dead baby [sorry for being blunt, but that is how it was presented to us]. We asked the medical staff to leave the room so we could be alone for a bit and be together while we absorbed this news. How did we wake up like this was a normal Tuesday morning and then only a few short hours later we are having to make a decision on how to end this wanted pregnancy?

John and I both felt we needed to go home and spend time thinking this over. The doctors did advise us if we wanted to continue the pregnancy that was an option also, however the outcome was not in our favor and our baby would most likely die immediately after birth. We drove home and grieved that night and texted our family to let them know what was going on. After sleeping on it and discussing things further as a family, we decided that termination was not right for us and we wanted to explore continuing the pregnancy and what that looked like. I reached out to my doctor on Wednesday morning, and she put in a referral for us with the Fetal Therapy Team at OHSU. We had no idea if this would be in vain, but we knew we couldn’t give up on our little girl and owed it to her to give her a fighting chance at life.

Terminating for medical reasons, commonly referred to as TFMR, is something John and I had discussed before at length. We did NIPT testing and carrier screening because we wanted to be sure we were bringing a healthy child into the world. Neither of us wanted to bring a child into the world with disabilities, challenges, or a quality of life we wouldn’t have wanted for ourselves, not just as human beings but also as the caretaker of that human. One thing I have learned with this experience is it is very easy to say, “yes, I would absolutely TFMR no matter what”, but it is another very different experience to make that decision when it is staring you in the face.