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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.

for one and all > I just want answers

I am frustrated with my OB's lack of answers. I know there's only so much he can explain but I saw him this morning, and the official autopsy results came back. All they can tell me is that there was a blood clot in my placenta which cut off oxygen to my son, based on how his lungs looked...and that's all. So he's guessing a minor Abruption occurred. And my likelihood in the future is low because I don't have preeclampsia, thyroid conditions, etc.

I had to ask him for additional blood work because he believed the blood work he gave me in the hospital were enough, which I tested negative for. It included antiphospholipid syndrome...but I asked for more specific clotting blood work today such as Factor V. Although he was skeptical he agreed. I also asked for a high risk referral, which he gave me. I'm just annoyed that it feels like I'm pulling teeth to get additional testing done and get absolutely everything covered. There has to be something that caused this, something underlying, right???? Or is this really just something that happens? I just can't take that chance anymore and I'm frustrated that everyone else, including my husband, is happy with that answer...
January 4, 2017 | Unregistered CommenterNada
I hear you.

I think they often want to just reassure us during these highly distressing appointments (and hearing the post-mortem results on your child is a highly distressing event!), and then they clumsily tell us everything will likely be fine next time. And this really backfires, because what we hear is something completely different - your life, your problem. Whereas what we really want is for someone to think along with us, and someone to tell us they'll do their best to prevent this from recurring.

I'm sorry they treated you that way.
January 4, 2017 | Unregistered CommenterAna
Nada- I would get a different OB. Find an MFM or perinatologist that specializes in high risk pregnancies and thinks that it's their responsibility to get to the bottom of what happened or, at the very least, make you feel comfortable with what they can get to the bottom of. When our son was diagnosed with having no kidneys, I ran into doctors of both mindsets- those who just shrugged their shoulders, told me I could get pregnant again, and that this was a "fluke", and those who dove into the details of what his case meant, what the chance of recurrence is (empirically 5%... so NOT just a fluke), chances of survival with aggressive treatment, etc. The difference was astounding. On one end of the spectrum, I had a doctor tell me that she wouldn't approve a fetal MRI since there was "no point" (it wouldn't tell her anything diagnostically different). On the other end of the spectrum, I met with a team of doctors that brought me in for another ultrasound, a fetal MRI, an echo cardiogram, and a team meeting with a doctor from every department that would touch our baby if we went with aggressive treatment. On some level, these doctors find cases like mine fascinating and see it as their job to push the boundaries of medicine and find answers where there are none (and they are amazing people because of it). Your best bet may be a children's hospital (try a fetal care unit). They have probably seen just about everything that can happen in a pregnancy. There were questions that the good doctors answered no problem that the other doctors I met with just shrugged their shoulders and said "there are just some things we don't know the answer to".

Good luck and I'm so sorry about this.
January 4, 2017 | Unregistered CommenterAbby
nada,
first, what a terrible feeling after an appointment that was probably something that you were waiting for answers. I know myself that each appointment I had with *any* doctor after seemed like some kind of "progress" toward finding answers and forward momentum. to leave an appointment feeling discouragement is rotten.
I totally agree with abby and also with ana, especially about the level of care that you need now.
sure, many people are fine with the "we don't know and it probably won't happen again" line.
but, its totally OK not to be fine with it to- I sure wasn't!

get to a more conservative OB practice with an MFM on staff or with solid connections to a MFM office.
in my experience, most OBs are perfectly great at managing low-risk heathy pregnancies and easy births.
but this is not what you need now.
MFM's J-O-Bs are to manage high-risk pregnancies and high-risk cases specifically to avoid a or another bad outcome. they don't see the world in low-risk "whatever" eyes... they see the world thru risks and avoiding those risks thru information, screening, testing, observing, etc. I think if that sounds more like what you want and need, it is a better match than to see a perfectly nice OB who is not *getting" you. wtf on dragging their feet on full bloodwork? seriously. I am so glad you asked for a referral.

even if your husband is ok with the answers he is hearing, it is OK for you to need more. just keep that as a mantra, because it makes some people uncomfortable, especially dealing with doctors who usually drive the bus, not the other way around. it drove my husband crazy when I googled things because he worried it would hurt me emotionally, but I needed more and more info. the info was more worthwhile the emotional pain it may have caused me to read the stuff, you know?

I also wanted to support you in this idea that of course there was a specific actual reason and cause of what happened. babies don't just poof and die for no reason. the real issue is that WE, the moms, the doctors, the experts, we just don't know all of the reasons. this is why we wind up with these patent lines of "it probably won't happen again" or "these things sometimes happen...". we know very little about why pregnancies fail and babies die. I have had two babies die and even though we have come to conclusions as to why, or what probably happened, I never actually found out WTF was the cause of it all... like, what was defective about my body, and was there a solution for it? no one seemed concerned about that missing piece of info. when I pressed on it, I was usually told that gestational carrier was the way to go if I was too afraid to carry. nice. I mean, it was true, but I still don't know if there is some kind of deficiency in my body or if it really was just a fluke or what. when my daughter died and they couldn't give me an answer why, my midwife told me that when she delivers a stillborn baby, she is always praying that there will be a triple knot in the cord so she will have an obvious reason to give the parents, it sounds terrible but I did understand what she was saying.

I think if you need more info, about any of it, just keep asking. for your own peace of mind, or for the info if you want to have another baby, or whatever the reason, it is OK to ask and seek and search. it is frustrating, like you are feeling now, because most people either are OK with not knowing and trusting that everything will be ok... I mean, there is always that blind trust that you need to have, just getting out of bed in the morning each day, but there is nothing wrong with wanting and needing to look under every single rock to find info and answers.

also, I just wanted to say that you will know when you are on the same page with your doctor, you will be able to tell. and if you don't find one that is perfect for you, just keep asking for what you need and try not to feel like you are asking for too much... because it is your right to ask and want to know.
January 4, 2017 | Unregistered Commenterss
Ana, Abby, and SS -- thank you so much for your responses.

Ana, I know that is definitely what I wanted to hear. Instead of just a shoulder shrug and "you have no risk factors," blah blah, I would rather have heard more of a care plan to prevent this from happening next time. I certainly didn't want to be the doctor. Nor did I want to be the one ordering another blood test for additional clotting disorders I wasn't initially checked for. I am tired of this laid-back approach, it worked when things were low-risk for me, but I need someone who will work tirelessly with me for results, not someone to just assure me that things will be okay...when we know first hand that crazy, freakish things can just happen.

Abby, you are so right. I am meeting an MFM soon, just waiting to hear back from her office for an appointment to come in. I definitely think my current doctor is at the far left of the spectrum, a very minimal approach that I am nowhere near comfortable with. I would much rather have a doctor that will stop at nothing to get answers. There was a particular MFM I met when I was in the hospital for pre-term contractions (I was out of town so I can't readily access her now), and I loved her because of how aggressive her approach was. She treated me with medicine to stop the contractions, and monitored me overnight. My regular doctors sort of shrugged their shoulders and said there's not much they can do to stop those contractions, and even questioned why she gave me medicine to stop them....I was only 22 weeks at the time, so I don't have to tell you whose approach I felt more comfortable with. The MFM I am meeting soon is part of the Fetal Diagnostic Unit at my local hospital so that comforts me. She also is taking care of another stillbirth mother, who I personally know, who also lost her baby at 38 weeks with a similar story as mine. My friend is now 7 months pregnant and highly recommends her. At this point I don't care if they test me every single day, put needles in my arms and attach me to an ultrasound machine, I WANT over-treatment, I want to be poked and prodded constantly just for my peace of mind.

SS, thank you for your thoughts--yes, I am also pissed about having to ask about additional blood work. My OB office is very reputable and experienced, but unfortunately there's only so much they can do with high-risk situations. And no matter how many times he tells me I am "not high risk", but just slightly more risky than low-risk, I suffered a stillbirth. I lost my baby. My son. I AM high-risk, and I think his idea of me being perfectly fine is just total bs. My husband also doesn't like me googling and researching and insisting that something must be wrong. Because, yes, just as you said, babies don't just die for no reason. You could have taken the words right out of my mouth! I try to explain to him that I am just not persuaded that "it's nothing," but he would rather be content with that. I know I am continuing to dig, but abruptions are abnormal and there has to be some sort of underlying reason for them. There has to be an underlying reason for my baby's death. As crazy as it sounds, I was actually hoping that my baby would have had a massive knot in his cord as well. At least it could be explained, then. Hopefully I will like my new doctor once I meet her, and I will feel that she will be the perfect fit for a future, anxiety-ridden pregnancy.
January 4, 2017 | Unregistered CommenterNada
Hi Nada,

I was just as frustrated as you with my OB. He basically shrugged it off, said the abruption was rare and don't worry about it. He'd just increase monitoring after 28 weeks for the next pregnancy. I highly disagreed and got my other doctor to give me a referral to an MFM. Best thing I ever did. The MFM ordered every blood test known to man, 15 vials worth! He found so many things the OB either overlooked or knew nothing about. In the end I had asymptomatic hypothyroidism and a MTHFR mutation. He then tested my husband for MTHFR mutations (which most docs never think to do) and discovered he had two alleles for the same mutation I had. This is what caused my abruption because MTHFR mutations cause blood clotting issues, especially in the placenta. He also found that my uterus is heart shaped which complicates things further. I seriously owe the lives of my two rainbows and my life to this MFM. I did have complicated high risk subsequent pregnancies but he managed them well. He saved our lives and was able to give us answers. Definitely see the MFM. They will know so much more about all of this. I hope they are able to give you answers and help you through another pregnancy if you wish to do so.
January 5, 2017 | Unregistered CommenterEjb
Hi Nada - I am in the same boat of frustration except I have already seen an MFM specialist. She spent time with us, I will give her that but shrugged it all off as a fluke. She said I am not high risk and if I want her to manage my case she will but I can go back to my regular OBGYN. Sad part is that when I asked her to explain to me what the care timeline would be like, it was MUCH less aggressive than what my OBGYN had suggested "for next time". She said she wouldn't let me get past 40 weeks (like I would wait that long) and would start non-stress tests at 36 weeks. I asked her about additional testing and she offered none, said they already tested for everything.

I pushed and she eventually sent me down to the lab for clotting tests but that was it. Its a pain having to navigate the medical aspect of this on our own but my psychiatrist said I need to become a squeaky wheel so I am trying my best. She more of less said we lost our son because we got lost in the system (my regular OBGYN wasn't available so I saw someone else). I hope you find peace
January 5, 2017 | Unregistered CommenterJ&A's Mom
Dear Nada,
I am so sorry for your loss... As I said before, I suffered a similar situation.
Behyond some natural disposition, for which maybe you may do other tests, but believe me, they might come negative too, there is really some component of Fluke in the abruptions.
Many of the medication they may prescribe you in a next pregnancy will be on the of chance, like at least it won't harm you and may be beneficial...

But these are words of someone who has gone over the same obssessions as you are going through, and has just accepted that there never willbe an answer to the why! But 2 years have passed for me, so I can only say, keep writing here what you are feeling, because it helps to heal!
But look for the old posts, the ones about the success of rainbow pregnancies after PA.
They helped me focus on a brighter tomorrow when in my darkest moods!
Lots of love and support!
January 6, 2017 | Unregistered CommenterMarta
Ejb, that is exactly what my regular OB said as well--I'm not high risk and he wants to increase monitoring after 28 weeks. But your MFM sounds amazing. I am meeting an MFM this coming Monday to also do as many blood tests and other things that I possibly can. In a way I am happy that they found your MTHFR mutation, because it was something they could actively treat for your next two pregnancies. It makes me so hopeful that you went on to have two rainbow babies!

J&A's son, I am surprised the MFM you saw had less of an aggressive plan than your actual OB. That is so frustrating. I agree that we have to be "squeaky" wheels with our situations. We have to be super aggressive. Did you end up going to someone else??

Marta, I guess you are right in that some abruptions really are flukes. I am trying to accept that but it's so hard to. I fear that my doctors will overlook a gene mutation or clotting disorder and under-treat me my next pregnancy. I have been reading and re-reading success stories after abruption and it is honestly comforting at the moment. I guess I will never truly have an answer and will have to jump into my next pregnancy, anyway...
January 6, 2017 | Unregistered CommenterNada
Hi again! I just wanted to say some additional things. In my story I did find answers, but that doesn't mean all cases have an answer to find. An MFM will be your best tool to find an answer if there is one. In saying that, not all MFMs are created equal. I researched all the MFMs in my area and found the one with the most research and best patient reviews. I insisted on a referral to him. It took me six months to get in to see him but it was well worth it. He managed both my subscequent pregnancies. My first pregnancy following that abruption went ok until dopplers showed the placenta failing at 34 weeks and I was induced then. My next pregnancy I had a complete placenta previa and started bleeding on and off at 31 weeks. I started abrupting at 33 weeks and had an emergency c-section. I spent 24 hours in ICU and had two blood transfusions and a complete iron infusion. Baby spent 21 days in NICU. It was all terrifying and I believe that neither babies or myself would be here today if I'd trusted my regular OB with my subsequent pregnancies.

Creating our family has been difficult to put it kindly. It was never a walk in the park. I had to fight for a competent medical team to get where I am. I wish I could tell you that if you get answers that will mean they can treat you and prevent it again. That may not be the case. I got incredibly lucky. The last thing my MFM said to me was that it was a pleasure saving my life. I'll never forget that. I almost hope for you that it was just a fluke and all other pregnancies will be easy peasy, but I also know answers do help. Keep us updated on everything and we'll always be here to talk things out and support you, no matter what.
January 7, 2017 | Unregistered CommenterEjb
Hi Ejb, thank you for further sharing your story with me.

I am hoping that the MFM I am meeting this Monday will be knowledgeable and help me shed light on all of my questions. I know she is the current doctor of another loss mom I connected with. She also lost her baby at 38 weeks, but she unfortunately never got an answer as to why he died. She is 7 months now in her subsequent pregnancy and she highly recommends her. So, I am hopeful that I will be happy with her, but I now know if I am not, I can and should continue researching to find the perfect MFM.

Your two subsequent pregnancies sound very difficult...but so worth it in the end. I am SO glad that you find the right doctor who knew what to do when you were in dire situations with each pregnancy. Also, it sounds like his approach was the right one in terms of monitoring with dopplers and catching the placenta failing in time. We need and deserve compassionate doctors who care for our situations and will go to any lengths possible to save our lives and our babies' lives.

I hope it was a fluke in my case as well, but I would also consider myself lucky if I find an MFM that will devote 100% into caring for me and trying his or her best to make sure this doesn't happen again....even if there isn't an answer, or if there is a horrible answer.
January 7, 2017 | Unregistered CommenterNada
I met with an MFM today for a second opinion about what happened...I really liked her and she was very thorough and met with me for a total of two hours. She answered every question I had no matter how silly ("was it the flu shot? Was it exercise?"), provided me with a pen and paper if I wanted to write out additional questions for her, ordered extra blood tests to rule out some clotting disorders and did an ultrasound of my fibroids (I asked if she thought the blood clot could have been caused by a fibroid behind the placenta so she checked their size and position). Everything was "normal." She kept reassuring and explaining that it's better for me to have a "normal" result from all of this than having found something so far, but we will see my blood test results. We discussed everything else possible...preeclampsia (no), thyroid (normal), diabetes (no), smoking (no!). Even the baby looked great to her and his growth, and the placenta itself. I told her my OB believes it was a concealed Abruption and she agreed with him because he delivered me but said it wasn't a huge one. So, no real answers....she cleared me to TTC when I am emotionally ready and if I wanted to go to her exclusively I would have the works; NSTs, extra ultrasounds, kick count charts, BPPs, and I would take baby aspirin starting 12 weeks no matter what the outcome of my blood tests are.

My meeting with her DID help me, although there was "nothing wrong" that led to the stillbirth, apparently. She was very intelligent and thorough, she really did go through my file and research all of my questions on the spot to make sure she was telling me the right things. It makes me feel less guilty about my son's death overall and put a bit of my anxious thoughts to rest. But now I have to wait and TTC to navigate a very difficult subsequent pregnancy.....
January 9, 2017 | Unregistered CommenterNada
Hi Nada, I'm so glad she was able to provide some relief of the guilt you were feeling. Keep in mind that you don't have the blood results back yet so she still may find something. No matter what, I agree with taking aspirin during the pregnancy. It won't hurt and may help. I took it with my subscequent pregnancies but I started while TTC. My MFM said that you need to take it so the embryo implants well and the placenta has a good, healthy blood flow from the beginning. I wonder why she's having you wait until 12 weeks. Maybe mine said what he said due to the MTHFR issues. Anyway, sounds like it went well and she is willing to listen and work with you. It's definitely a step in the right direction.
January 10, 2017 | Unregistered CommenterEjb
Ejb, thank you for responding to my update.

What seemed funny to me was that the MFM actually trained my current OB, but my OB seemed more flexible on certain things. I believe he would let me take the baby aspirin early, as early as when I get a BFP. He suggested the baby aspirin much faster than the MFM did who had to explain first that there are no studies stating they are harmful. He also told me that the hospital policy is to induce at 39 weeks and no earlier, but because I told him I won't go up to 38 weeks, he said he will work with me and induce me earlier under a "medical reason." The MFM seemed stuck to 39 weeks, but I know she has a patient now who also had a full term stillbirth and she persuaded her to accept a 37 week c section. So I guess I have to keep advocating and pushing them.

She talked about putting me on heparin along with the baby aspirin if I am positive for a clotting disorder. I am wondering if the blood tests come negative, if I can still get injections along with baby aspirin to be safe. Not sure where she would stand on that but I really don't want to take any more chances or assume everything will be ok on this regimen.

Also, I was surprised because I mentioned MTHFR to her and she almost brushed it off. She explained that if I'm not positive for Antiphospholipid or Protein S deficiency she didn't feel like MTHFR would be positive and something about heterozygous VS homozygous... maybe I will bring it up to my regular OB and also her again. I know she also sort of dismissed testing for Factor V Leiden BUT I convinced my regular OB to test me for that. So it's like a back and forth bargaining game it seems. It annoys me a bit that I am bargaining pretty much for my safety and the safety of my future baby. But I am going to keep pressing them on anything else I find. I want every single thing checked out before I am pregnant.
January 10, 2017 | Unregistered CommenterNada
Hi Nada, it's crazy how one speciality can very so much. Some are much more conservative than others. Regarding baby aspirin, I went with it won't hurt and can only help. With the blood clotting disorders, I was negative for all of them, except I was heterozygous for one of the MTHFR alleles. Because of that, the MFM tested my husband. The placenta has the DNA of the baby so if I'm heterozygous, it makes a huge difference what my partner is. My husband ended up being homozygous for the same allele, meaning our babies have a 75% chance of also being homozygous. That means clotting issues affecting the placenta is highly likely to happen. I was on heparin and baby aspirin, even with my last pregnancy with placenta previa. If you end up being heterozygous, make sure they test your hubby. Heparin probably isn't necessary if no MTHFR issues are found and it can actually cause some bleeding problems. I lost over 2 litters of blood with the placenta previa and needed blood transfusions. Regarding delivery time, I never made it past 34 weeks but our plan was always to deliver at 37 weeks. I'm not sure why the big push in some places to get women past 39 weeks when 37 is considered full term. I guess the closer to 40 the better. I had steroid injections to mature babies lungs so even though they were born at 33 and 34 weeks, they were only on CPAP and never on a ventilator. Both were latching at the breast within 48 hours of birth too. I was terrified to trust my body to keep my babies safe and trusted them being cared for outside of me much more, so for me the earlier the delivery (after 32 weeks) the better. Keep fighting for what you need. Educate yourself as much as you can too. I read so many medical journals on stillbirth that I probably could pass the OB medical board exams. It also helps that my dad is a doctor, I am a veterinarian and I work in medical research specialising in maternal and childhood diseases. I know the people and I know they will be honest with me and advocate for me. You may have to push harder but leave no stone unturned. Nothing wrong with being overly thorough and asking too many questions.
January 10, 2017 | Unregistered CommenterEjb