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Parents of lost babies and potential of all kinds: come here to share the technicolour, the vividness, the despair, the heart-broken-open, the compassion we learn for others, having been through this mess — and see it reflected back at you, acknowledged and understood.

Thanks to photographer Xin Li and to artist Stephanie Sicore for their respective illustrations and photos.

ttc | pregnancy | birth after loss > Upcoming Perinatologist Appointment

Looking for advice for my upcoming pre conception appointment with the perinatologist. Our son, Carter, died in February. He suffered, for unknown reasons, loss of oxygen in utero at 33 weeks causing severe brain injury. We made the very difficult decision to withdraw care after 3 days in the NICU.

My OB recommended an appointment with the perinatologist to just eastablish a relationship as well as review Carter's case, discuss potential testing, and what management would look like with a subsequent pregnancy. I'm nervous about the appointment - it's the first step on the TTC road again. I've made a list of questions I want to discuss.

Any advice on questions you felt were important to ask? Testing? Anxiety/fear management in subsequent pregnancy? Anything really. I've read and spoke with other loss moms that finding a physician who you trust and is in line with what kind of care you want is really important. I guess I'm just wondering how you evauated that in a doctor.

Sending lots of love and hugs to everyone.
May 29, 2017 | Unregistered CommenterJenna
Do you go to any local baby loss support groups? They may have local recommendations. Also, do you live near a research university with a medical school? These doctors tend to be current on the latest research.

As for asking questions, I came in armed with pages of questions. I found this helpful so I wouldn't forget anything when I knew I'd be going into an emotional situation. After my first loss, I went alone and kind of froze. The specialist was so reassuring I skipped over many of my questions. When I had another loss and opted for another consult I discussed questions ahead of time with my husband ahead of time and brought him along for support.

I'm a bit of a medical nerd, so I researched potential questions by doing my own research on pubmed and scholar.Google.com.
May 29, 2017 | Unregistered CommenterMom2htb
I don't have much advice. But I will offer you lots of good luck. We meet with our Drs recently and we found it very helpful and reassuring, so I hope you'll feel the same. Xx
May 30, 2017 | Unregistered CommenterBeckie
We thought about it as two separate processes: (1) understanding what went wrong with Isla's birth and (2) finding someone we trust to provide care in the future. You might find someone amazing who can do both for you, but in our case we knew that the person who could provide the best information about (1) was not the same person we wanted to have an ongoing relationship with. I found having a written list of questions really helpful (I wrote down everything that had been buzzing in my head about 'what if ...' and 'maybe I should have ...' and 'what would have happened if ...'). Afterwards, my husband and I wrote a long document with everything that we remembered from the appointment. That was really, really helpful because I knew that I didn't have to hold all those thoughts in my head. It's also helpful if you can have a contact email/phone number/etc to talk the doctor if you have follow up questions (so you don't have to go through any automated systems or receptionists, etc. and explain your story). Good luck - it's an exhausting process, but hopefully it can give you some comfort.
May 30, 2017 | Unregistered CommenterK West
Thank you so much for the responses.

Mom2htb, yes my OB is affiliated with a medical university. I do feel, on that end, I'm getting the lastest data and recommendations. I'm a RN so researching the medical journals has been a big part of the last 3.5 months. It helps me formulate the questions I want to ask.

Beckie, thank you for the well wishes. I'm glad your appointment went well and was reassuring. I hope mine provides that as well.

K West, thank you for the insight. I, too, have about 5 pages worth of questions. Hopefully, the physician isn't put off by that. I'm assuming when the case involves the loss of a child they are more receptive to parents questions. Good advice on writing everything down after the appointment - I'll plan to do that now. And I'll definitely be bringing my husband now after so many of you did the same.

I appreciate all the advice. Thinking of you all and our babies gone too soon. Hugs.
May 31, 2017 | Unregistered CommenterJenna
Jenna - I'm only 5 weeks out from my full term loss, but I am hoping in a few months I'll be making a similar appointment and would love if you let us know how your appointment went and if there are any questions you recommend asking.
May 31, 2017 | Unregistered CommenterS
Hi S, I am so sorry for your loss. Yes, I will update after the appointment to offer any advice or helpful questions. It's all a bit anxiety producing but hopefully having some sort of plan will provide a little comfort. Wishing you peace.
June 1, 2017 | Unregistered CommenterJenna
Hi Jenna, the MFM we saw after our daughter died almost 3 years ago was amazing. First, his geneticist nurse went through our entire family history with us for about 30 minutes, then he spent over an hour with us pouring through the autopsy and placental reports, explaining every little thing (what was normal, what was a cause for concern and explained what happened too, as best as he could tell)). And he was so compassionate, but honest too. He explained in detail what the risks to me and baby were in subsequent pregnancy, what his treatment plan would be etc. I hope this doctor you're seeing is as thorough. If not, or if you don't like them, I hope you live in a place where you can find someone else. Good luck. For us, the run to seeing this doc was hard, the actual appointment wasn't easy but we came out of it with a lightened load.
June 2, 2017 | Unregistered CommenterAB
I'm sorry! That was supposed to be hi S! But hello Jenna too. Sending all a big hug.
June 2, 2017 | Unregistered CommenterAB
Thank you again to everyone for their advice on the perinatologist appointment. The appointment was reassuring. It's a nice change of 'tone' from the appointments my husband and I have been through in the last 4 months.

S, I just wanted to give you an update since you will have an appointment in the future. I, as a lot of the ladies here suggested, went in armed with questions. I broke it down into sections: 1) residual questions relating to my son's case - questions about the decreased fetal movement, tests performed in the hospital, autopsy report. I covered anything that continued to linger in my head. There is no reason why Carter stopped receiving oxygen in utero. We likely won't ever know - everything about me was healthy, placenta/umbilical cord was healthy, Carter was healthy - appropriate for his gestational age and no genetic concerns. We spent some time discussing the odds of this happening again.

2) Recommendations for future testing - we revisited the genetic testing we had performed with Carter, discussed the need for testing relating to clotting disorders, autoimmune disorders, MTHFR mutation, anemia. Anything she felt would be a benefit or yield any insight prior to TTC.

3) Questions relating to care in a subsequent pregnancy. We spent a fair amount of time on this one. I needed to not only feel comfortable with her personality wise but I needed to know she was receptive to the type of care I envisioned for a subsequent pregnancy; that I will require A LOT of reassurance. I did a lot of research on this (in terms of antepartum testing) to know what I would want moving forward. And a lot of that is based on my experience with what happened with Carter.
1) Will care be followed by both the OB and MFM?
2) Timeline for TTC - physically only. I wanted to take the 'emotional' concept out of it. When is my body physically able to sustain another pregnancy? Strength of the c-section scar; can we do a transvaginal sonograph to check thickness of scar?
3) Do I have the option to have increased monitoring (more ultrasounds early on, increased in 2nd trimester for monitoring fetal growth, starting at 28 weeks the desire for non-stress test and biophysical profiles and Doppler studies - how frequent can these be performed? Starting at 30 weeks can we increase to weekly? Do I have the option during my trigger week (between 32-33 weeks) to come in daily if I need reassurance?
4) Option for a in-utero fetal MRI?
5) Option for early c-section between 37-38 weeks (because I do not think I will have the mentally capacity to go 40 weeks or wait for labor to happen naturally)
6) Ultrasounds to look at the cord pathology?

She was receptive to it all. And said all of that can happen. She is well aware of the mental toll a subsequent pregnancy can take on the parents and would do everything I needed to help lessen the anxiety. I liked her a lot and immediately felt at ease. She had reviewed our case prior to the appointment, she walked through our case with us, she was not turned off by my questions (she actually very much welcomed them), she gave me her personal cell phone number, and most importantly she was optimistic. She kept repeating that she believes my next pregnancy will be uneventful and have a very different outcome. And even though that's hard for me to believe right now, it did give us a little hope for the future.

May have been too much detail but hopefully it gave you some insight for your upcoming appointment. I do agree, the lead up to the appointment caused some anxiety but the actual appointment went really well.

Sending lots of love everyone's way.
June 7, 2017 | Unregistered CommenterJenna
Jenna - Thank you so much for the detail - it will be really helpful for me when I start getting ready for my appointment in August. I'm glad you liked the doctor and it sounds like you have a good road forward for when you are ready to start TTC again. My 6 week postpartum appointment with my OB yesterday was not at all reassuring (and made me think that he really doesn't know what he's talking about and that he's just not paying close attention and wasn't in the last few weeks of my pregnancy), so I will hope that my meeting goes as well as yours.
June 7, 2017 | Unregistered CommenterSR
Hi Jenna, It sounds like it was a very thorough appointment. that's great. A lot of the extra monitoring you are wondering about/want, I had in my rainbow pregnancy with my son. My OB and MFM worked closely together to provide it. And it was of great comfort. I'd add only 2 things: some of the extra ultrasounds/monitoring (in particular the chord ones, require a particularly skilled technician. In my case, that was the team of techs at my MFM who have been with this doctor (who himself has been an MFM for 20 years) all of them, for more than 10 years. They even had extra certifications for ultrasound techs. The scans always took for ever but they always started with baby's heart and went from there. I had an extra ultrasound at my OB at week 28, which is when my daughter died, and I didn't even have to ask. They just said "we know this is when you're daughter died, we get you're scared, we're telling the insurance this is medically necessary so it's covered." It still makes me cry to think of that kindness. Anyway, the second thing is, I got myself a Doppler and it was comforting for me. Anyway, if this is what you're planning, just know you'll be at either OB or MFM about once week for the entire pregnancy, except maybe (like me) during the second tri, I saw each once a month. After 32 weeks, I saw them each once a week until I delivered at 37 via scheduled c (transverse baby and MFM said no way to a version/waiting past 38--37 was Dec 17 for me so 38 was dec 24--couldn't be scheduled then, MFM said 37! Phew!).
June 7, 2017 | Unregistered CommenterAB