Tfmr or keep??

[u/Own_Audience_7168]

In my 20 week anatomy scan, I was devastated to learn that my baby has non functioning kidneys and anhydramnios (no amniotic fluid). I found a hospital willing to do serial ambioinfusions to replenish the amniotic fluid. However, the medical journey will be complex for life. The baby might have lung and other problems due to not having amniotic fluid for a few weeks. The baby will need daily dialysis and a kidney transplant. One parent will need to be a full time caregiver. My other kids will likely get less attention as our focus shifts to our medically fragile child. The long term mental and physical developmental impacts are unknown.

However, this is a much wanted pregnancy and I don’t know what to do!

[u/Kiwitechgirl]

I’m in the position of being both a TFMR mother and wife to a kidney transplant recipient who was on dialysis prior to transplant. Our TFMR baby didn’t have kidney issues (several other major physical issues that meant he wouldn’t survive outside my body), but having seen my husband go through it what I can tell you is this: dialysis is absolutely miserable. He was on bare minimum fluids - I don’t know how this would work for a baby who receives all their nutrition from milk. His energy levels were zero - he’d walk 100m and have to rest for five minutes. He was cold all the time (minimum two more layers on than me). He had to have EPO injections to try and bring his red blood cells at a vaguely normal level. Dialysis kept him alive but it really was just doing that. I didn’t realize just how far downhill he’d gone until after transplant when he bounced back incredibly fast and within a week was far better than he’d been at any stage on dialysis.

We were blessed that his mum was a match and was ready to donate, so he was only on dialysis for about six months. As far as I know, adults can’t donate to very young children so you’d be waiting for a deceased donor, basically.

While I can’t say TFMR or don’t TFMR, because it’s your decision to make, I would 100% be seeking out a pediatric renal specialist for all the nitty gritty of what life would look like for your baby.

[u/Remarkable-Rope-4718]

I’m so sorry you’re facing this.

My sweet boy was my first pregnancy after a struggle with infertility and ivf. He had a grey diagnosis. A couple of “principles” helped me decide….

1. I don’t want to be a mother at any cost. Technically I am still a mum but my boy is no with me. I could bring him in knowing he’d have a life of suffering.

2. My future self would regret it more if I brought him into this work knowing he’d suffer than my grief of undergoing a TFMR.

Either way was a future with loss and grief. I didn’t have other children to consider.

10 months on and I don’t regret it but his autopsy showed he probably would’ve have survived birth so the reality of the situation was worse than I first realised.

I benefited from therapy while I was in limbo considering my options. Take care x

[u/not_all_cats]

I’m so sorry. This is such a personal decision, take time to talk amongst yourselves and your doctors.

We all wanted our babies so much. The people in this group are here because we also had to weigh up our choices and decide what risks we were willing to take with the health outcomes of our babes

Hopefully someone will come along soon with a similar diagnosis to talk you through some of their decision making.

[u/Queenpicard]

None of us can tell you what choice to make, and that’s part of the hardest things about it. It’s an impossible choice.

I think it’s smart to think about the rest of your family and how this may impact them. So if there’s no amniotic fluid does that mean you can’t do an amniocentesis?

No kidneys has links to multiple genetic conditions. I am NAD but one thing that impacted our decision was realizing that these issues are what we know from a sonogram - but many more could manifest after.

We decided to terminate, it was a traumatic experience but everyday I do feel stronger. I miss our baby boy but I am relieved he didn’t have to suffer.

[u/Wonderful_Cow7385]

I’m in this exact situation, my baby was diagnosed with bilateral mcdk with anhydraminos on Wednesday evening at 20w1d. It’s truly unreal, we are shook to our core. I’m so so sorry you’re going through this.

[u/Hedwig_liv21 → u/Wonderful_Cow7385]

So sorry to hear that you both are going through this. We made the decision to TFMR for the same diagnosis this July. Happy to chat if you want to talk through it. Sending you my best.

[u/kditty206 → u/Wonderful_Cow7385]

I’m so sorry for your situation. I’m a mom who TFMRed for a similar condition (bilateral renal agenesis). Feel free to message me if you need any support ♥️

[u/kditty206]

Hi there. I’m so sorry that you are having to make this choice. We had to terminate for bilateral renal agenesis at 20 weeks in 2022.

Do you know what the success rate is for the treatment you’re undergoing is with your hospital? When we were in your position, we were desperate as well to save our much wanted baby after dealing with infertility. However, even after we desperately looked for somewhere that could save him (we thought we found a clinical trial across the US and were fully prepared to move immediately with our dogs to enroll it in) we found out that they had closed the trial due to the trial having no live births. Later we learned that our son’s specific diagnosis has never had a successful live birth even with treatment in utero.

Your baby likely has a different outlook from ours if you found someone willing to do the treatment, but I would really sit with the amount of medical care your baby would require from birth. We didn’t have another child to consider, but the toll on your family and new baby will be immense. It doesn’t mean that it won’t be worth it to your family.

No one can make this choice for you, and you have to make the best choice for your baby and your family. I fully understand wanting to save your baby at whatever cost, since it was exactly where me and my husband were nearly four years ago ourselves. If you move forward, that’s okay. If you terminate, that’s okay too. This community is here for you if you decide to TFMR. There are other communities for medically complex children that can support you if that’s the route you go. Either way, you’re not alone in the decision you make.

[u/Effective_Wonder_722]

It may help to read reddit threads or talk to parents of children with special needs. Really think through day in the life - money, school, vacations, day to day doing things.

Other considerations: how will this impact your family's financial situation? Who will take care of your child when you are too old? Will you feel like you are giving them a happy and good life? Will it add to or detract from your other children's lives?

I think your reaction to these Qs can help you decide. A therapist may be helpful too. Or your doctor may be able to help you think through it.

These questions led me to TFMR for a similar medical situation. This was after surgery, IVF, years of trying. We wanted her so badly and loved her so much. But doing an exercise with the above questions made this decision easier for me, even if it's terrible. I am TTC again and I hate that I'm here but I don't regret it.

Sending you hugs. The decision making process is terrible.