If your baby was born with a medical problem

[Anonymous]

How open were you about it with other people? My baby was born with an obscure medical condition. She is mostly fine but may have a few things to deal with as time goes on. I am finding myself feeling strange about whether or not to share details with various people. I don’t want to hide the issues as I’m definitely not ashamed or reluctant to discuss them, but I also don’t want to over share. It is just so common for everyone to say mom and baby are healthy, and although that is mostly true for us, it doesn’t feel fully honest. For distant acquaintances there is obviously no need to share, but what about close coworkers, somewhat distant family members, etc.? My mom had even suggested I send a mass email to the family at some point with info on the medical condition, but that just seemed like a bad idea to me. So I’m curious what others have done in this type of situation.

[Anonymous]

OP, it’s hard to answer thoughtfully without more context.

One of my kids had an issue, discovered shortly after birth, that required major surgery at six months. But the nature of it it also wasn’t anything I felt compelled to discuss until the surgery actually happened.

Congrats on your baby and best of luck navigating this.

[Anonymous]

My daughter was diagnosed with a rare syndrome three weeks after birth. We knew there was an issue when she was born. It was terrifying. She had 5 surgeries in her first two years. We didn't announce it per se. It is no one's business. And honestly, we do post on FB during rare syndromeonth (because seriously like 1 expert in the country cares about the syndrome).

I would advise to take it one day at a time and be fiercely protective.

[Anonymous]

Everyone is different and has different comfort levels. I did as your mom suggested and sent a blanket email to family so that I could set the narrative and the tone. It was also a way to get everyone on the same page without actually having to have 15 different conversations. I absolutely recognize and understand why some people keep it closer, but for me, it was almost a relief to just get it out there.

[Anonymous]

I told only very close family and friends on a need-to-know basis, on the advice of my mother. One of my aunts while an otherwise lovely woman, is the village gossip who has the habit of making every bit of news all about herself.

[Anonymous]

I’in the same boat. Our baby was diagnosed with a syndrome that needs to be monitored, but will likely not cause any issues. We opted not to tell anyone, including our parents, which was tough, but our parents are gossipers and would not be able to keep it to themselves. I didn’t want that stress in my life to make it a bigger deal than it is.

[Anonymous]

It's different for everyone based on each situation. My son was born with breathing issues that resolved (except he has asthma). So I didn't really tell anyone because I wasn't sure what was going on, didn't really need any extra help, and am a pretty private person who, when faced with difficulties, just puts my head down and plows through them.

[Anonymous]

Depends what it is. I would likely only disclose to family/coworkers/very close friends in an organic way, going with the flow. Depending on what it is. But no public service announcement.

What is the condition?

[Anonymous]

I had a baby who needed surgery right after birth. It was not a condition that was known before birth, so a surprise. I think my workplace especially was expecting a birth announcement (because that's how it was done in my office), and I got messages asking if I'd had the baby yet when there was no message "baby born! mom and baby doing well!" I don't even remember what I did because I was just trying to deal with everything -- I think I told one head person the the basic details of what happened and she spread the word so I didn't get a million messages. They sent a gift basket. Fortunately it was something that could be resolved after surgery with no lasting effects so I was able to update later. Same to family and friends.

It was not something I could keep confidential because she was in the NICU for a while and I was blindsided by this development, so that wasn't really an option. If it was something like a condition that needed to be monitored, I wouldn't disclose. No reason they need to know.

[Anonymous]

Anonymous wrote:I had a baby who needed surgery right after birth. It was not a condition that was known before birth, so a surprise. I think my workplace especially was expecting a birth announcement (because that's how it was done in my office), and I got messages asking if I'd had the baby yet when there was no message "baby born! mom and baby doing well!" I don't even remember what I did because I was just trying to deal with everything -- I think I told one head person the the basic details of what happened and she spread the word so I didn't get a million messages. They sent a gift basket. Fortunately it was something that could be resolved after surgery with no lasting effects so I was able to update later. Same to family and friends.

It was not something I could keep confidential because she was in the NICU for a while and I was blindsided by this development, so that wasn't really an option. If it was something like a condition that needed to be monitored, I wouldn't disclose. No reason they need to know.

Frankly after going through some medical issues before my child was born I worship the ground oversharers walk on because I did not have a single freaking clue how “common” medical issues are either in the womb or post-birth. In fact I reached out to some barely-acquaintances on Facebook that had shared about going through something similar years prior, because I felt so alone. Obviously do what is best for you and your family but man people have to start feeling comfortable talking about real life.

[Anonymous]

DD was born with a hole in her heart and we knew from a late ultrasound. We pretty much told everyone. There was a possibility it would close on it’s own but it didn’t so she had surgery at 15 months and is perfectly fine now.

Yes, we definitely talked about it openly and freely.

[Anonymous]

Agree with others it depends on how much you typically share. We are pretty private, don’t do social media. But our parents, siblings, and close friends eventually knew DD needed physical therapy twice a week until she was 2. We definitely did not send out a mass email blast about it (I think that is overkill and kind of weird TBH), we just shared organically if/when it came up (eg, Oh we can’t make it Tuesday bc Larla has a PT appointment etc”.)

Congratulations on your new baby, and I hope any health issues she faces are minimally intrusive!

[Anonymous]

Anonymous wrote:DD was born with a hole in her heart and we knew from a late ultrasound. We pretty much told everyone. There was a possibility it would close on it’s own but it didn’t so she had surgery at 15 months and is perfectly fine now.

Yes, we definitely talked about it openly and freely.

You might be my friend. In her case, rallying her support network allowed us to send gift cards to local restaurants and care packages while they lived next to an out of state hospital for 6 months while their child was in NICU.

As a friend, you feel so helpless. It was good to be able to get mass updates on the health of the baby and send our love as best as we could.

[Anonymous]

Thanks everyone, and best wishes to you and your families. I think I would do some kind of family mass notification if my DD winds up needing surgery/treatment of some kind, but I'll probably only mention it if it comes up naturally otherwise. I'm pretty sure most people in the family already know through the grapevine anyway.

[Anonymous]

Anonymous wrote:DD was born with a hole in her heart and we knew from a late ultrasound. We pretty much told everyone. There was a possibility it would close on it’s own but it didn’t so she had surgery at 15 months and is perfectly fine now.

Yes, we definitely talked about it openly and freely.

I had this, but it resolved on its own.

My own DD had a medical issue serious enough to (nearly) require surgery and it resulted in a stay in peds after she was born. On top of it, I was a disaster medically as well.

After a few days of people "expecting" an update, I shared a simple "baby is here, we're recovering" type announcement to my workplace slack and with our daycare. Figured it would keep the prying at bay. It mostly did. Since it was serious short term but not long term, that was the end of it, really.