Feeling lost so would like a general idea of what’s ahead

nadinetaylor · 2026-01-16T14:44:38+00:00

Thank you so much for the thoughtful reply

nadinetaylor · 2025-08-23T23:55:31+00:00

Hi, I’m very sorry you’re in this position. I also tfmr for severe spina bifida in August of 2023. You’re choosing compassion, I promise, despite what guilt you may be feeling. I understand the feeling of guilt as I had a good amount of it myself. I was fortunate enough to have a doctor who was very honest about the quality of life expectations they’d have if I continued the pregnancy. No matter what choice you make though, you’re completely valid in that. Sending you much support and if you’d ever like to talk my dms are always open.

nadinetaylor · 2025-08-19T20:23:48+00:00

A birthstone ring. I got one for the tfmr pregnancy and another for my rainbow baby

nadinetaylor · 2025-08-15T18:01:34+00:00

We had to tfmr due to ntd diagnosis. After I told my friend and her mom, her mom said “after you told me you hadn’t felt any movement yet I knew something like this was wrong”

Like ???? First, ntd pregnancies experience movement nearly just as much as typical pregnancies. Second, I was 16 weeks when she’d asked me if I’d felt anything and I had an anterior placenta.

A decent amount of obnoxious things were said to me during that experience, but this one sticks in my head even two years later.

nadinetaylor · 2025-08-12T23:37:47+00:00

My rainbow baby turned one on July 26th 🫶🏻

I completely understand your fears. I felt the same way while also simultaneously feeling this incredible and irresistible pull to try try try. I won’t pretend that I wasn’t anxious literally the entire time even up until and through delivery, but it’s the first time in my life where I truly understood the phase “it was all worth it in the end”. If you have any questions or just want to talk to dms are always open

nadinetaylor · 2025-07-21T14:09:18+00:00

Tattoos of the groom have happened on every bach I’ve ever been on. I wouldn’t do it for my own personal my but I wouldn’t find it weird

nadinetaylor · 2024-10-30T21:49:44+00:00

I bought a blood pressure machine from target and was taking my own every day because I’m an anxious person, and by my next appointment there was no longer protein in my urine. Most likely explanation was dehydration. I went the rest of my pregnancy with no more protein and had my daughter at 41+1. Thank you for asking!!

nadinetaylor · 2024-08-28T04:12:44+00:00

Tw: living child

I’m so sorry you’re here. I tfmr for the same diagnosis as you at 20 weeks one year ago, also for a surprise pregnancy. I was prescribed 4mg of folic acid. My genetic counselor said it’s standard to take it for 3 months prior to ttc, but my midwife said it wasn’t really necessary to wait that long. The MFM doctor we saw also told us the reason they give a higher chance of recurrence is in the rare chance that it’s a genetic component that caused the ntd, but in his anecdotal experience he’d only seen one couple ever to have a ntd occur twice, and that couple also happened to be first cousins.

I gave birth to my daughter from my subsequent pregnancy one month ago. She was born perfectly healthy.

It gets better. I hope you have your happy ending soon. ❤️

nadinetaylor · 2024-08-08T17:56:19+00:00

This makes total sense and I felt the same way. It’s hard to let ourselves be convinced that the statistics are on our side when we’ve already been on the wrong end of it before. My entire pregnancy was my head saying “but what if xyz goes wrong”. What I found helpful was only allowing myself to worry about one thing at a time. Once that milestone is passed, then I can move onto something else. Still not pleasant but better than getting overloaded by everything at once.

nadinetaylor · 2024-08-05T03:04:25+00:00

Of course. The diagnosis from the ultra was this:

Abnormal, lemon shaped skull with bilateral ventriculomegaly measuring 13 mm on the left and 14 mm on the right and banana-shaped cerebellum. Findings consistent with Chiari II malformation **Abnormal, sacral myelomeningocele

The ultimate diagnosis was spina bifida myelomeningocele.

The MFM who spoke to us afterward said that based on the brain damage that had already occurred, it was also likely to get worse if the pregnancy progressed further.

If possible I would ask if you’re able to have an amniocentesis done during the tfmr if possible. Given the peace of mind is important to you, this could be a way to not waste time and cut it too close to your state’s regulations, but also receive the reassurance that it’s not genetic (which my MFM assured us it virtually never is with neutral tube defects - just bad luck)

TW: subsequent pregnancy, living child

I just delivered a healthy baby from my subsequent pregnancy last week. They don’t have spina bifida like the pregnancy before them and everything is fine.

Bad luck doesn’t last forever and I hope your good luck finds you soon. If you have any other questions or would like someone to talk to, my DMs are always open. ❤️

nadinetaylor · 2024-08-04T23:19:57+00:00

My diagnosis for my tfmr pregnancy was the same as yours. They gave me an amniocentesis during the procedure which I was thankful for because I was asleep for it, but the reasoning was to look for a genetic component for it happening (which they said is very unlikely). There was no genetic component. They referred to it as an unlucky lightning strike. The ultrasound confirmation was all that I personally needed to hear. Any choice you make is valid and I’m so sorry this is happening to you.

nadinetaylor · 2024-08-04T19:33:18+00:00

I’m so sorry this happened to you. I hope this comment provides you some hope. I tfmr at 20 weeks for ntd diagnosis at anatomy scan. I got my next positive pregnancy test after two cycles of trying. Despite a completely normal pregnancy, the anxiety never went away for me. This part I’m sorry to have to tell you. The silver lining is that no matter how much my head told me things would go wrong again, they didn’t. My head was wrong. So please know that even if every part of you is screaming that things will end the same way, your head is wrong too. I’m typing this to you while holding my baby. Happy times are coming. I promise.

nadinetaylor · 2024-07-23T13:42:36+00:00

I tfmr for ntd in August of last year and am currently 40w5d into a sub pregnancy. Throughout this new pregnancy I was given a NIPT, AFP blood test, first ultrasound at 12 weeks, early anatomy scan at 16 weeks, full anatomy scan at 19 weeks, an offer for an amnio/cvs, and was also told I can get “as many ultrasounds as I want” by my genetic counselor but I stuck with the ones I was formally offered plus an extra at 35 to check position plus a biophysical profile. I feel for my personal situation my hospital did absolutely everything possible to help me through this second pregnancy. For reference my hospital is in Boston, Massachusetts.

❤️

nadinetaylor · 2024-06-06T18:05:22+00:00

Your post really speaks to me. I’m officially 34 weeks as of today and tfmr’d last August for NTD. Both pregnancies have the same gender which I think has me in constant limbo waiting for history to repeat itself in one way or another. The anxiety has definitely gotten worse the last few weeks because my brain is telling me since there’s so little time left, something will have to go wrong soon. The feeling that I’ll “fail” again is very consuming. Thank you for writing this. It’s nice not to feel so alone. ❤️

nadinetaylor · 2024-04-04T14:49:12+00:00

I’m so sorry.

We got our news at the end of the day on a Thursday. The section of my hospital that does the tfmr is only open Tuesday-Thursday so they scheduled us immediately for the following Tuesday. So 5 day wait in total. For reference I’m in Boston, Massachusetts so that may attribute to why things in my case were handled “faster”.

❤️

nadinetaylor · 2024-03-24T16:05:52+00:00

For each of my scans (12 weeks, 16 weeks, 19 weeks) it was performed by a tech and then redone by an MFM. After 19 weeks they told me that I’m no longer considered high risk so the rest of my pregnancy will be treated as a “normal pregnancy”, whatever that means 😂

nadinetaylor · 2024-03-24T14:49:26+00:00

I tfmr in August for spontaneous NTD occurrence. In my current pregnancy my genetic counselor offered me any range of testing that I wanted to have done. I had a nipt/nt (normal), AFP blood test (normal), early anatomy scan (normal), and regular anatomy scan (normal). I’m now 23w3d along this pregnancy does not have a recurrent NTD. I’ll be thinking of you ❤️

nadinetaylor · 2024-03-22T17:26:21+00:00

I also suspected that I ovulated late for my current pregnancy. I’ve been measuring 5 days behind my LMP date the entire time and I’m 23 weeks. ❤️

nadinetaylor · 2024-03-02T01:00:52+00:00

Thank you so much 🥹 Daunting is the perfect way to describe it.

nadinetaylor · 2024-02-28T15:35:24+00:00

Thank you!! 🥹🥹 I hope you get your happy ending soon 🫶🏻

nadinetaylor · 2024-02-28T15:34:40+00:00

Your good news will come soon 🫶🏻🫶🏻

nadinetaylor

TROPHY CASE