I am drowning under the weight of a decision that I can't possibly make.

Our story: We were expecting our 1st baby Anora to be due July 29, 2020, when at our 30 week routine prenatal appointment, learned that her heart had stopped beating. I delivered her on May 28, 2020, she was the most beautiful baby I'd ever seen, and we said goodbye. We were told there was a possible cord accident, but no confirmation of cause. I still struggle to put into words how her loss shattered our hopes and broke our hearts, but I'm sure all here can understand.
After some intensive healing, though not enough, my husband and I tried again and were lucky to conceive a second baby in October of 2020. We couldn't wait to share all the overabundance of love in our hearts and experience that joy of parenthood. We are ready.
It seems the universe has even more waiting in store for us. Last week an ultrasound showed that my fluid was too low - at 18 weeks. After consultation with a perinatologist, we are told that our baby has no functioning kidney, little to no amniotic fluid, and is not expected to survive outside the womb. A baby that grows in an environment with no fluid does not develop lungs. Thus, if the baby does not experience a fetal demise in the coming weeks/months, then he/she will likely die within hours or days of birth. Another crushing blow. We are then told that we have 2 options - terminate the pregnancy or carry as far as it will naturally go, and deliver.
As cruel a turn of fate as it was to lose Anora, this just feels so much worse. How can I decide how my baby is to die? Am I to let them be born, only to suffer and gasp for air with no lungs, and die in my arms? Or am I to just have them ripped from the womb with a still beating heart? There's no easy choice.

If anyone has experienced a similar diagnosis or loss of any kind, my heart is open to hear how you weather the storm.

Dear A`s Mom, I am so sorry that Anora is not with you.
I do not think I could write anything helpful because I never experienced a pregnancy diagnosis, but neither does it feel as if I should just read this and say nothing.
So all I can say is: I see you, and I see Anoras` baby brother or sister.

Dear A’s Mom, firstly, I’m so sorry for the loss of your Anora and that the world has dealt you another horrific blow.
My daughters story is different, but we also has a diagnosis. All my scans looked fantastic ( even the anatomy scan) but around 21 weeks my belly got huge, so I was booked in for another scan at 26 weeks. That’s when we learned she would die. She had a suspected CPAM (lung malformation), but her autopsy would later confirm she had emphysema. Due to her illness I developed polyhydramnios (too much amniotic fluid). My husband and I were given the option for induction then and there, or to carry, which they did not recommend due to my uterus being distended. They told us she would die either during birth or shortly after.
We chose to carry. I have never regretted my decision, even though I got bigger and bigger. I had three amnio reductions, developed a liver disorder and was contsantly sick due to the pressure on my organs. My body finally gave in at 31+5 and my waters broke. Due to my decision my placenta was hydropic (so was she) and I had to have a emergency csection. I still don’t regret it. Those extra six weeks meant the world to me. I could talk to her and tell her about all the places I wanted to take her. Love her as much as I could. My thought process was, that if this was my one shot at motherhood, then I’m gonna spend as much time with my child alive as I can.
I’m so sorry you’ve been dealt this blow. It’s horrible that you and your husband are experiencing this on top of everything else. If you need to chat or ask any questions I’m always here xx

A’s mom,
It’s a heart-breaking, unimaginable decision in which both options end in tragedy and babyloss. Whatever path you and your husband choose, trust that it was made from a foundation of love and choosing what is best for this little one - there is no greater parenting choice. Your deeply personal decision about what is best for you and your family at this time is yours alone to make and remember no one deserves to judge what you ultimately choose. I imagine you will question whatever happens, but the questions and what if’s will soften with time and healing.
For us, when my cervix was dilated 4-5 centimeters at 20 weeks, which is pre-viability (meaning my twin daughters were too young to have medical intervention), we were given the choice to terminate the pregnancy or let early labor take its course. We chose the latter holding out hope that somehow someway we could hold on until the edge of viability and medical intervention. There was a small chance of harm to my health, and my husband made it clear that at no point could my life be in danger. It was awful, because I continue to think sometimes about what I would give to have my beloved girls alive, but alas it was and is not a choice. My husband and I had different preferences, and we both respected each other’s choice in how to handle devastating heartbreak. For instance, I chose to continue looking at my girls’ ultrasounds while it was too hard for my husband knowing they were doomed to die. We only made it another week in the hospital before my daughters came in to the world at 21 weeks and 2 days. This may not be your case, but neither one of our daughters gasped for air or seemed in pain. They passed peacefully and quietly in my arms. I had no idea how developed they would be or whether they would suffer. They were tiny and precious. Their eyes were still fused, but I could see my husband’s likeness in b and a’s heart-shaped face. The nurses were wonderful and honored my girls. We’re all here for you in whatever way is helpful in the days, months and years to come.

Dear A's mom,
I can relate very close to your story... Pedro died at 33 weeks, of a full placental abruption in 2014.
We were forced to wait for more than a year, to try and conceive again, and we were lucky, it did not take long a by father's day 2016 I discovered I was pregnant again. We named this baby Hope... (we have a saying, Hope is the last to die) We told everyone... But she never developed a beating heart...
We had to terminate, waited no time and by next month we tried and succeeded again.
It was an anxious pregnancy, because we were always scared of loosing the baby again, during the first, the second and third trimester.
Rodrigo is now close to 4 years old little boy that fills our hearts with joy.
It was hard, but having him turns out previous history less... Hard ... to cope with...

Your decision is quite difficult... I hope that there is a next time soon, and that it will work out just perfect (as it should, for everyone).

I am so sorry for your loss and diagnosis. We terminated in 2016 for bilateral renal agenesus. I hope my post finds you in time.... one of the best things we did was get lots of other opinions. We ended up at Cincinnati children’s hospital where they will try to save the baby if that’s what the family wants. We ultimately decided not to go that route since the odds were so low, but I am forever grateful that we had those meetings and fully explored our options. Let me know if you want to discuss more offline. I’m so sorry for this horrible news. Sending love your way. Xoxo

Hello all,
I just wanted to acknowledge your replies, and thank you so much for sharing your stories. It certainly makes me feel less alone, and as if there are others who made it through this kind of loss, I can too.
I know now after many consultations and research that there isn't a wrong choice in this scenario, because any choice is made from a place of love and heartbreak. My husband and I have decided to carry the baby, as there doesn't seem to be any elevated risks to my health (we seem to be very lucky in that respect), and for other reasons I can't put into words.
Wish us luck, and thank you again for you very kind words!

A’s mom- there is also a Facebook group for potters syndrome. The group is very active and can help prepare you for your journey going forward. Xo

Abby - that sounds super helpful. Will look into that. Thank you!

A’s mom- I’m sorry for spamming your post but I have been thinking a lot and wanted to make diverging clear (just in case it wasn’t in my last post). I want to be careful since I don’t know any specifics if your baby’s condition, or what your life circumstances are, but I did want to mention that during our journey with potters syndrome (which it sounds like you are facing) there are aggressive treatment options at some select hospitals in the US... maybe a few other countries too. Prognosis depends a lot on your baby’s specific case (no kidneys vs. non functioning vs cystic, etc) but that could be a path. It often involves something called amnioinfusion, which is reinjecting fluid back into the uterus to help baby’s lungs develop. We started to go this route, but ultimately decided not to continue. I wanted to mention since my MFM said 100 pct fatal, but then by chance I discovered this option.

I’m sorry if this makes things more difficult... depending on the exact diagnosis it may or may not be a good option. But I would hate not to mention it... please let me know if you want to talk more. The fb group for support for potters syndrome is also a good learning resource about everything (comfort care, aggressive intervention, termination, what to expect while you carry, etc).

Xo

Hi Abby,
No worries, not spamming! I joined the FB group for Potter's, it has been really helpful, thanks for the recommendation!
I have read a bit about the amnioinfusions. It sounds promising, just curious how much the places that offer it charge, as it's considered an experimental treatment. I'll see what my Dr says for sure.
Thanks again!

Dear Anora's mom,

I'm so sorry that you are going through this... all of this.

I too had a daughter with a diagnosis incompatible with life. We chose to continue the pregnancy but the problem was discovered very late, which is a slightly different situation. I think the most important thing is not the decision itself - after all, life has already decided for you that your baby cannot live - but how you will bond with your baby in this final period. For some, it is important to meet a living baby even if it is just for a few minutes, to be able to hold them and say goodbye. For others, it is important to spend that time feeling the little wiggles inside you as long as possible and doing things together as a family. For yet others, it is important to end the baby's development while they are still tiny, to not prolong an impossible situation. It's a matter of reframing what it is that you hope for, and thinking about how to make that happen as much as possible. Whatever you decide, it will seem like a less terrible decision if you focus it around connection.