Mar 29, 2022·edited Mar 29, 2022Liked by Virginia Sole-Smith
As the mother of a baby born with a host of health conditions that she didn’t survive, thank you for this. Hours of therapy have helped me mostly believe it wasn’t my fault, but the culture around this is so, so toxic.
Mar 29, 2022·edited Mar 29, 2022Liked by Virginia Sole-Smith
My first-born had a stroke during delivery ("even though I had a perfect pregnancy") and I almost died from a post-op (emergency c-section) blood infection. The line "as long as the baby is healthy" made -- and makes -- me want to SCREAM when I hear it. What if the baby is unhealthy? What if the birthing parent is unhealthy? Thank you seeing me. XO
When my younger daughter Sammi was born at 41 weeks and very very shockingly tiny, the geneticists descended for all kinds of tests. When one of them came to the side of the isolette to tell me that she was genetically just fine, I asked why she was so small then (not sharing weight here but suffice it to say that it was unnerving). He said, "We call it IUGR - intra-uterine growth retardation. It basically just means she had a bad incubator."
Hi. I am a bad incubator.
Then she was dx'ed with a congenital heart condition and I figured it probably had to do with me, her bad incubator. Was it the antibiotics I took for a sinus infection during my 2nd trimester? Was it my nausea that made me subsist on salads and french fries for 18 weeks? Was it too much hot chocolate for the rest of the pregnancy? I didn't actually ask anyone those questions - like you, Virginia, I was sure someone would say "yep, that's what it is." And amidst the medically fraught years that followed I was exhausted, scared, frantic, way too caught up in everything else to think about what it did to me to believe I'd grown a baby wrong.
We do not talk about this enough. Thank you for bringing it up again.
"basically just means..." I.e. how can I put this the absolute shittiest way possible?! I am so sorry you went through and are going through all that. It is so awful how the medical industry forgets we are humans (esp postpartum humans with a shit ton of hormones and emotions flowing through us to begin with!) and just casually throws out outlandish language like this that equates to accusation. Regardless of what they learned to call it in a class, they MUST do better and recognize that labeling a medical diagnosis in such a way is just f*cking hurtful and wrong. Agree with Virginia, this will stay with me for a long time and definitely encourage me to speak my mind and advocate for myself and my children more in the doctor's presence. WE are the customers and they need to start acting like it.
Thank you both - it's fascinating how the medical world puts so much blame on mothers when things go wrong but refuses to consider us an integral part of the treatment team to make things right.
This was so important to me today. My family has been through A LOT in the past 6 months. First, it was discovered that my husband had a whole host of health issues culminating in a few seizures (the last of which happened in our driveway with me and while my son was pooping in the bathroom yelling "Mommy I'm all done what's going on?!") because he was secretly drinking.... a lot. He went to rehab in sept and has been extremely successful in AA and just hit 6 months sober! Shortly after his stay at a recovery facility, we lost a dear family friend in a murder suicide, and then the year rounded out with me finally being able to conceive after 2 years of trying only to miscarry. Through all this we have tried our very best to keep things as normal as possible for our almost 5 year old son and for all intents and purposes, he is a wonderfully well adjusted happy boy. However, a few weeks ago, it came to our attention he was drinking A LOT of water - more than an adult would drink in a day (140+ oz) and the panic set in that I was an awful mom for missing this. We are between peds so took him right to a children's hospital upon recommendation from a peds nurse we know because it sounded like Type 1 Diabetes. They ran all the tests and everything came back completely normal, so they asked, has there been anything going on at home. The tears began to flow as I explained all the traumas our family has been through and really hit me how much it all was when a room full of doctors gasped at every new piece of this horrific puzzle. They said that the water drinking is likely a psychological subconscious response to all we have been through and I just sank to the deepest low as I started to research child psychologists in our area. I tried so hard to keep everything normal for him and it still wasn't enough. This all still hit him too. To hear the words, "it's not your fault" is the most important thing a Mom can ever hear and I needed to hear it so deeply that again when reading the newsletter today I just wept. Sorry for the long response but thank you from the bottom of my heart.
It’s not your fault. It’s not your fault. A good child therapist will be able to help tons, but it’s not your fault that he is responding to a ton of stressful stuff, none of which you chose. We can’t keep it all normal all the time, all we can do is exactly what you did - love your kid and show up for him as best you can. (And huge congrats on your husband’s six months sober!)
Our babies (your second, my first) are almost exactly the same age; mine was born September 2017. Reading this made my heart seize; I'm so sorry that you went through so many feelings of guilt and shame. My son was breech, and nothing I did - the yoga positions or swimming or whatever else they tell you will flip a baby - flipped the baby. I had an ECV, which sucked, because there was so much shame around having a c-section coming from my ob practice and all the ultrasound techs and the general pregnancy shame culture. Then I ended up having one anyway, even though the ECV had flipped him. If I had it to do over again, I'd have scheduled a c-section so quickly the baby probably would have flipped spontaneously. Instead I had this ECV and then an agonizing induction during which I barely dilated and ended up exhausted in surgery 24 hours later.
My kid's amazing and healthy and the best, even when he asks why 500 times in a 5-minute drive to school. I wish I felt better about the way he entered the world.
Oh yes, the blaming language around "failing" to flip a baby is so enraging. Sometimes babies are breech! Isn't it so great we have C-sections to get them out safely!!! (Love, A Breech/C-Section Baby Who Turned Out Alright ;)
OMG this is me too!! I was April 2017 with my lovely breech boy! I wanted a "natural" birth more than anything and was actually taking Hypno Birthing classes when we found out he was breech and I remember the "teacher" doing all this voo doo etc and talking to the baby to tell him to flip. I did EVERYTHING - even burning those weird mugwort sticks near my pinky toes! He stayed put and I had to have the C and was the first of many times the culture around pregnancy/delivery/parenting made me feel like I wasn't doing it right. What the actual f*** with this toxic culture we live in. And 100% agree with Virginia - how LUCKY are we to have C's to deliver those babies safely?!
I remember my midwife going from "you may be someone who gains at the top end of the weight recommendations, and that's fine, you're tall," to worrying about my lack of weight gain in subsequent weeks when my acid reflux went into overdrive and eating enough was difficult. The band for getting it "right" is so narrow!
This! And it resonates in EVERY facet of life! Especially children! "Oh wow great job eating all your lunch!" to a four year old yet if they have a larger body when they are going through puberty the same person is likely to say, "Are you sure you want to eat all that?" It's insanely frustrating and disheartening. Let me eat and be thanks!
My first thought is about this part of your writing: 'This is also the problem with parents saying they don’t care whether it’s a boy or a girl, “as long as we have a healthy baby.” The unsaid part is that any unhealthy baby is somehow less than.' Thank you for sharing this. I have said that line many times about my own pregnancies and others and I can honestly say I had never thought about what that implied if the baby had some health challenges. It's a different perspective and one I will be mindful of from now on. Thank you.
On a different note: Both of my pregnancies have been in many ways the healthiest periods of my life. I ate well, I slept better, I had that glow, everything shone brighter. My mental health was markedly better. I remember thinking that if this is what regular people felt like everyday when they woke up, then I shouldn't feel bad about taking depression / anxiety meds because my regular non-pregnant self could not compete with that feeling. The pounds fell off both times (not saying that's directly an indicator of health but it was nice) - to the point that the babies had to be monitored to make sure they were growing well because I was losing that much weight. Thankfully they were. To this day, I don't know how much of my weight loss during both pregnancies was a result of taking care of myself better, or trying my hardest to be doing pregnancy "right", keeping the babies wants and needs top of mind rather than my own (sad) or just not giving a f*** about the fact that I was bigger because guess what Im pregnant, and all of a sudden all the noise stopped mattering. I suspect it was a combination. Both times were very happy times, but it was also a bit of a mindfuck. It's good to be reminded that there is no such thing as doing it right in pregnancy or parenthood, or life really.
On your first note yes!! I have said this too and I am realizing now how misguided it is to say something like this. Really changed my perspective on this phrasing as well <3
It's crazy the standards we put on things. Women and babies mostly went through pregnancy and birth just fine before modern medicine stepped in; while obviously I'm grateful for the advancements that have been made (I would have died during birth without them!), that knowledge should give us more security, not less. The idea that things must be absolutely perfect lest disaster strike is wild if you think about it. If pregnancy were so fragile, we wouldn't have survived as a species.
Thank you for writing this thoughtful piece. My kids are adults now, but your retelling of the doctor's "compliment" brought me right back to how uncomfortable those well intended but patronizing remarks made me feel. Like getting unearned credit or blame for something that I couldn't really control or understand.
I was so unprepared mentally for human babies that my version of "I don't care if it's a boy or a girl so long..." was "Boy or girl? I might have more of a clue if it's a puppy or a pony." I appreciate the insight that the original phrase is unintentionally cruel to parents of a baby with health challenges.
And - I know this was a secondary detail in the piece- but I remember the "actually" phase with my older son! I loved the determination to be accurate. He doesn't say "actually" all the time any more but he still does love to express things precisely.
I find so much of this idea problematic, this idea that the mother controls the outcome of their baby. It really places undo stress onto a mom to have to do everything right to prevent anything "wrong".
I recently was looking at support with conceiving our next baby and got on a popular fertility practitioners mailing list and it's all about "building your super baby" and as a mom of three with kiddos that have had a variety of needs that have come up as they've aged, you can't "build" a baby/child that doesn't have challenges come up at some point. I hope that makes sense! Like, we can do all the "right" things and our children will still have a variety of things that we never saw coming, come up.
As the mother of a baby born with a host of health conditions that she didn’t survive, thank you for this. Hours of therapy have helped me mostly believe it wasn’t my fault, but the culture around this is so, so toxic.
I’m so sorry for your brutal loss and for this toxic culture that makes it even harder to grieve and heal. Xo
So very sorry for your loss, Leah. Sending you all the healing wishes.
I’m so so sorry. I’m thankful you can (mostly) believe you aren’t at fault.
My first-born had a stroke during delivery ("even though I had a perfect pregnancy") and I almost died from a post-op (emergency c-section) blood infection. The line "as long as the baby is healthy" made -- and makes -- me want to SCREAM when I hear it. What if the baby is unhealthy? What if the birthing parent is unhealthy? Thank you seeing me. XO
Yes, yes, yes. What if we stopped equating “success” with “health,” full stop?!
You know I'm here for this conversation.
When my younger daughter Sammi was born at 41 weeks and very very shockingly tiny, the geneticists descended for all kinds of tests. When one of them came to the side of the isolette to tell me that she was genetically just fine, I asked why she was so small then (not sharing weight here but suffice it to say that it was unnerving). He said, "We call it IUGR - intra-uterine growth retardation. It basically just means she had a bad incubator."
Hi. I am a bad incubator.
Then she was dx'ed with a congenital heart condition and I figured it probably had to do with me, her bad incubator. Was it the antibiotics I took for a sinus infection during my 2nd trimester? Was it my nausea that made me subsist on salads and french fries for 18 weeks? Was it too much hot chocolate for the rest of the pregnancy? I didn't actually ask anyone those questions - like you, Virginia, I was sure someone would say "yep, that's what it is." And amidst the medically fraught years that followed I was exhausted, scared, frantic, way too caught up in everything else to think about what it did to me to believe I'd grown a baby wrong.
We do not talk about this enough. Thank you for bringing it up again.
BAD. INCUBATOR. I am going to be in a rage about this for months if not years to come.
"basically just means..." I.e. how can I put this the absolute shittiest way possible?! I am so sorry you went through and are going through all that. It is so awful how the medical industry forgets we are humans (esp postpartum humans with a shit ton of hormones and emotions flowing through us to begin with!) and just casually throws out outlandish language like this that equates to accusation. Regardless of what they learned to call it in a class, they MUST do better and recognize that labeling a medical diagnosis in such a way is just f*cking hurtful and wrong. Agree with Virginia, this will stay with me for a long time and definitely encourage me to speak my mind and advocate for myself and my children more in the doctor's presence. WE are the customers and they need to start acting like it.
Thank you both - it's fascinating how the medical world puts so much blame on mothers when things go wrong but refuses to consider us an integral part of the treatment team to make things right.
This was so important to me today. My family has been through A LOT in the past 6 months. First, it was discovered that my husband had a whole host of health issues culminating in a few seizures (the last of which happened in our driveway with me and while my son was pooping in the bathroom yelling "Mommy I'm all done what's going on?!") because he was secretly drinking.... a lot. He went to rehab in sept and has been extremely successful in AA and just hit 6 months sober! Shortly after his stay at a recovery facility, we lost a dear family friend in a murder suicide, and then the year rounded out with me finally being able to conceive after 2 years of trying only to miscarry. Through all this we have tried our very best to keep things as normal as possible for our almost 5 year old son and for all intents and purposes, he is a wonderfully well adjusted happy boy. However, a few weeks ago, it came to our attention he was drinking A LOT of water - more than an adult would drink in a day (140+ oz) and the panic set in that I was an awful mom for missing this. We are between peds so took him right to a children's hospital upon recommendation from a peds nurse we know because it sounded like Type 1 Diabetes. They ran all the tests and everything came back completely normal, so they asked, has there been anything going on at home. The tears began to flow as I explained all the traumas our family has been through and really hit me how much it all was when a room full of doctors gasped at every new piece of this horrific puzzle. They said that the water drinking is likely a psychological subconscious response to all we have been through and I just sank to the deepest low as I started to research child psychologists in our area. I tried so hard to keep everything normal for him and it still wasn't enough. This all still hit him too. To hear the words, "it's not your fault" is the most important thing a Mom can ever hear and I needed to hear it so deeply that again when reading the newsletter today I just wept. Sorry for the long response but thank you from the bottom of my heart.
It’s not your fault. It’s not your fault. A good child therapist will be able to help tons, but it’s not your fault that he is responding to a ton of stressful stuff, none of which you chose. We can’t keep it all normal all the time, all we can do is exactly what you did - love your kid and show up for him as best you can. (And huge congrats on your husband’s six months sober!)
Oh my gosh- my heart goes out to you and your family. I hope that there are peaceful times ahead for you all.
Our babies (your second, my first) are almost exactly the same age; mine was born September 2017. Reading this made my heart seize; I'm so sorry that you went through so many feelings of guilt and shame. My son was breech, and nothing I did - the yoga positions or swimming or whatever else they tell you will flip a baby - flipped the baby. I had an ECV, which sucked, because there was so much shame around having a c-section coming from my ob practice and all the ultrasound techs and the general pregnancy shame culture. Then I ended up having one anyway, even though the ECV had flipped him. If I had it to do over again, I'd have scheduled a c-section so quickly the baby probably would have flipped spontaneously. Instead I had this ECV and then an agonizing induction during which I barely dilated and ended up exhausted in surgery 24 hours later.
My kid's amazing and healthy and the best, even when he asks why 500 times in a 5-minute drive to school. I wish I felt better about the way he entered the world.
Oh yes, the blaming language around "failing" to flip a baby is so enraging. Sometimes babies are breech! Isn't it so great we have C-sections to get them out safely!!! (Love, A Breech/C-Section Baby Who Turned Out Alright ;)
OMG this is me too!! I was April 2017 with my lovely breech boy! I wanted a "natural" birth more than anything and was actually taking Hypno Birthing classes when we found out he was breech and I remember the "teacher" doing all this voo doo etc and talking to the baby to tell him to flip. I did EVERYTHING - even burning those weird mugwort sticks near my pinky toes! He stayed put and I had to have the C and was the first of many times the culture around pregnancy/delivery/parenting made me feel like I wasn't doing it right. What the actual f*** with this toxic culture we live in. And 100% agree with Virginia - how LUCKY are we to have C's to deliver those babies safely?!
I remember my midwife going from "you may be someone who gains at the top end of the weight recommendations, and that's fine, you're tall," to worrying about my lack of weight gain in subsequent weeks when my acid reflux went into overdrive and eating enough was difficult. The band for getting it "right" is so narrow!
This! And it resonates in EVERY facet of life! Especially children! "Oh wow great job eating all your lunch!" to a four year old yet if they have a larger body when they are going through puberty the same person is likely to say, "Are you sure you want to eat all that?" It's insanely frustrating and disheartening. Let me eat and be thanks!
Oh sheesh, yes!
My first thought is about this part of your writing: 'This is also the problem with parents saying they don’t care whether it’s a boy or a girl, “as long as we have a healthy baby.” The unsaid part is that any unhealthy baby is somehow less than.' Thank you for sharing this. I have said that line many times about my own pregnancies and others and I can honestly say I had never thought about what that implied if the baby had some health challenges. It's a different perspective and one I will be mindful of from now on. Thank you.
On a different note: Both of my pregnancies have been in many ways the healthiest periods of my life. I ate well, I slept better, I had that glow, everything shone brighter. My mental health was markedly better. I remember thinking that if this is what regular people felt like everyday when they woke up, then I shouldn't feel bad about taking depression / anxiety meds because my regular non-pregnant self could not compete with that feeling. The pounds fell off both times (not saying that's directly an indicator of health but it was nice) - to the point that the babies had to be monitored to make sure they were growing well because I was losing that much weight. Thankfully they were. To this day, I don't know how much of my weight loss during both pregnancies was a result of taking care of myself better, or trying my hardest to be doing pregnancy "right", keeping the babies wants and needs top of mind rather than my own (sad) or just not giving a f*** about the fact that I was bigger because guess what Im pregnant, and all of a sudden all the noise stopped mattering. I suspect it was a combination. Both times were very happy times, but it was also a bit of a mindfuck. It's good to be reminded that there is no such thing as doing it right in pregnancy or parenthood, or life really.
On your first note yes!! I have said this too and I am realizing now how misguided it is to say something like this. Really changed my perspective on this phrasing as well <3
Thanks so much for sharing, Ana.
It's crazy the standards we put on things. Women and babies mostly went through pregnancy and birth just fine before modern medicine stepped in; while obviously I'm grateful for the advancements that have been made (I would have died during birth without them!), that knowledge should give us more security, not less. The idea that things must be absolutely perfect lest disaster strike is wild if you think about it. If pregnancy were so fragile, we wouldn't have survived as a species.
Thank you for writing this thoughtful piece. My kids are adults now, but your retelling of the doctor's "compliment" brought me right back to how uncomfortable those well intended but patronizing remarks made me feel. Like getting unearned credit or blame for something that I couldn't really control or understand.
I was so unprepared mentally for human babies that my version of "I don't care if it's a boy or a girl so long..." was "Boy or girl? I might have more of a clue if it's a puppy or a pony." I appreciate the insight that the original phrase is unintentionally cruel to parents of a baby with health challenges.
And - I know this was a secondary detail in the piece- but I remember the "actually" phase with my older son! I loved the determination to be accurate. He doesn't say "actually" all the time any more but he still does love to express things precisely.
Ahaha, I loved the actually phase and yes it definitely corresponds to a continued obsession with accuracy.
Lovely. Resonates! XO
Thank you Charlotte!
I find so much of this idea problematic, this idea that the mother controls the outcome of their baby. It really places undo stress onto a mom to have to do everything right to prevent anything "wrong".
I recently was looking at support with conceiving our next baby and got on a popular fertility practitioners mailing list and it's all about "building your super baby" and as a mom of three with kiddos that have had a variety of needs that have come up as they've aged, you can't "build" a baby/child that doesn't have challenges come up at some point. I hope that makes sense! Like, we can do all the "right" things and our children will still have a variety of things that we never saw coming, come up.