Lets not just stand around my baby crying
January 2, 2013 10:33 PM   Subscribe

My 1.5 week old baby was born a month early and is being treated for an extremely rare, incurable genetic disorder discovered last weekend via newborn screening. I haven't told anyone beyond my parents, and in the meantime everyone keeps offering to help with/visit the baby. What should I do with them? I can't bear to have the same horrible conversation over and over.

My husband and I are scared and devastated, and there are more questions than answers about the baby's future at this point. I can't talk to kind medical professionals about how things are going without crying, let alone family and friends. My parents keep asking for updates that I don't have and want to come over all the time. All the normal "ask people to bring over food and/or clean" newborn advice runs counter to my gut reaction of just wanting peace and quiet at home in-between the constant doctors appointments, surprise hospital trips, and sleep-deprived cluster feeding. Plus, having a medically-fragile infant around people during flu season is terrifying (especially when any fever or vomiting for the rest of my son's life now equals an instant trip to the ER).

I know we shouldn't try to go at it alone, but that seems like the easier path right now. What can we do? How do I take people up on their offers of help when I really want them to back off? How did you deal with family/friends and a medically-fragile baby?
posted by Maarika to Human Relations (30 answers total) 6 users marked this as a favorite
Do you have a blog/Facebook/something where you can mass-announce what's going on and ask your family for some privacy right now? Alternatively, can you ask your parents to notify your other family members/friends that right now you need the peace and quiet?

I am so, so sorry.
posted by Autumn at 10:42 PM on January 2, 2013 [9 favorites]

Can you have a trusted friend or family member spread the word about the diagnosis, so you don't have to? And then when someone asks to visit just say, "Hey, we have a medically fragile infant and our doctors have recommended we limit visitors." If people want to bring food, just tell them to leave it on the porch and send you a text after they've dropped it off.

My kid was healthy and I had no desire to have piles of visitors either. Having a newborn is overwhelming just as a rule, so adding in any complications just magnifies it all.
posted by chiababe at 10:43 PM on January 2, 2013 [15 favorites]

This is a job for your closest friend, whoever that is. Tell one person you trust enough to spread the news around for you and let everyone know how you'd like to handle it. I'm sure there is someone in your life who would be more than willing to do this for you right now and both appropriately explain the situation while shielding you from unwanted "support."

Best of luck to you and your family. I can't even imagine what you must be going through.
posted by amycup at 10:45 PM on January 2, 2013 [16 favorites]

Circle the wagons, parents and grandparents only. Say complications to others and get off the phone.
posted by Ironmouth at 10:46 PM on January 2, 2013 [3 favorites]

Sounds like you could use a gatekeeper or two. Delegate a volunteer?
posted by Coaticass at 10:47 PM on January 2, 2013 [5 favorites]

Agree.... You are 1000% in the right to ask people to back off while y'all get your feet under you. Maybe a close friend or relative can coordinate some meals that can be dropped off so you have one less thing to think about but don't feel bad about pushing folks away until you are ready. Baby comes first. Your sanity and peace is next. I hope everything turns out for you.
posted by pearlybob at 10:47 PM on January 2, 2013 [2 favorites]

I'm so sorry you're going through this! I'm a new mom and can barely keep it together any given day. I have no truly useful advice, but have you considered a postpartum doula? A doula might be able to fill in for some of the standard support network (cooking, help with nursing if you're nursing) while your family settles into your new reality. I think being in the midst of flu season is a perfectly valid reason to give those well wishers a raincheck on a visit - lots of people request time without visitors even under the best circumstances. Sending all my best wishes to you and your family!
posted by kayebee at 10:48 PM on January 2, 2013 [7 favorites]

Your parents need to get on your side about the no visitors need. Delegate to them the task of letting people know that there have been complications, that you and your husband and new child need time to process what's happened, and that you hope to have good news soon, but that you need their support from afar, not up close and in person.

Sending you so many hugs and good thoughts.
posted by These Birds of a Feather at 10:53 PM on January 2, 2013 [3 favorites]

You need an ally, someone you trust (and ideally your parents trust) to run interference. Do you have a good relationship with either of your parents? Do you siblings? A trusted family friend? This person can serve as the public face of your current challenge and communicate what needs to be communicated.
posted by KokuRyu at 10:54 PM on January 2, 2013

Tell one close family member (sister? mom? aunt?) and ask them to run interference on the larger circle. Ensure your close family knows what going, but most importantly knows how you feel and respects your wishes. Try not to say no to some of the help - you may find it helps you cope.
posted by Kololo at 10:55 PM on January 2, 2013

Actually preemies are susceptible to germs, so I don't think anyone would blink if you explained that the doctors want to limit the baby's exposure to people and germs right now. That way you get people to back off, but you don't have to get into it with them.
posted by bananafish at 11:14 PM on January 2, 2013 [9 favorites]

All the above suggestions are good, but most of all - do NOT feel guilty for enforcing boundaries that you really need at the moment, to keep your baby and yourself safe and functioning.

Real friends want to do whatever is best for you. Don't worry about tiptoeing around them.
posted by Salamander at 11:29 PM on January 2, 2013 [9 favorites]

I sent a mefimail, and this doesn't directly answer your question, but if the diagnosis of the genetic condition was based just on the newborn screening, I would talk to a specialist about whether a DNA test to confirm is worth it. Without going into details, we had a premature baby who was diagnosed with a congenital condition that later turned out (via a DNA test) he didn't have.
posted by Admira at 11:41 PM on January 2, 2013 [3 favorites]

I just want to make clear one thing: you do NOT have any obligation to tell anyone about this diagnosis unless you want to. Don't feel like you owe anyone an explanation for your behavior or what's going on. Yes, if you want everyone to know about it without having to tell them, you can use other people to spread the word and so forth as people are saying above, but you do not have to do that if you aren't ready to. I know it is hard to remember this in a Facebook world, but no one else is entitled to know your private business, especially when it comes to health information.

Tell your parents explicitly to stop asking for updates, that it's upsetting you and that you will tell them as soon as you know more (and then don't feel compelled to tell them anything until you really feel comfortable telling them more and you've had time to process whatever you find out first).

Tell your friends that you are so grateful for their offers of help, that you are very tired right now and can't deal with visitors. If it were me I might use them to bring me some take out food or groceries or other baby goods/household items I needed and drop them off at the house, but if you would find it too stressful to see or talk to them without inviting them in and playing hostess, then don't.

You are absolutely right to be afraid to have an infant around other people during flu season - this new diagnosis notwithstanding, this goes for any newborn baby. So don't! Anyone who's got a problem with trying not to endanger your child can go stuff it.
posted by treehorn+bunny at 12:00 AM on January 3, 2013 [9 favorites]

I'm so sorry to hear about your situation.

nthing that this is a job for your closest friend. Choose one person, your #1 most trusted friend or family member, and ask that person to handle talking to everyone. You can give that person some guidelines, like what you want to say and to whom, and how long per day you will accept actually talking to people (if at all), and at what time (if at all). Let them be in charge of the details beyond that.

This might not be a job for your closest friend actually, but for your most assertive and responsible, boundary enforcing friend.
posted by kellybird at 12:18 AM on January 3, 2013 [2 favorites]

If you are okay with people knowing what's going on but don't want to be repeating the same story over and over, Caring Bridge or Care Pages are blog-type sites for medical updates.

Please let someone help you right now. You don't need to let everyone help, but I agree with other posters that you should have someone step in for you. This person can provide what updates you are comfortable with and also gather the offers of help, such as organizing regular meals for you (there's a website for that, too, I think it's called Meal Train). You deserve to be taken care of.

Like Admira, I was also warned that my preemie's newborn screens might return some false positives, and some false negatives. And I will second everyone else who supports you in keeping visitors away during cold and flu season. At minimum you could require visitors to get both a flu shot and whooping cough vaccine before visiting; that should cut down in a lot of the requests. Your doctors might even be happy to "require" this for you.

My heart goes out to you.
posted by peanut_mcgillicuty at 2:02 AM on January 3, 2013 [3 favorites]

Whoever does the information spreading, also have them take IOU cards right now for offers of service. At some point, when your mind is wrapped around all this, a few scheduled added hands may give you a little peace - but as others have said - its totally ok to tell people to back off right now.
posted by Nanukthedog at 4:04 AM on January 3, 2013 [3 favorites]

A relative of mine used caringbridge.org to keep people informed while deflecting a lot of the questions that inevitably arise when something like this happens. She also had her parents do a lot of the communicating by mass email to point everyone who was concerned to the caringbridge site. I'm so sorry you're going through this.
posted by gorbichov at 7:05 AM on January 3, 2013 [2 favorites]

Could your parents come to some of the doctor's appointments with you? They'd get to see the baby but not take away from your nesting time at home; they'd learn what was going on (if you're OK with that) and stop asking for updates; they could drive; they could take notes during the appointment, if that's helpful.

That wouldn't work if your relatives would cause more distress during the appointment, but if they're good in a crisis they might be helpful.
posted by The corpse in the library at 8:33 AM on January 3, 2013 [1 favorite]

Several years ago my wife's cousin gave birth to a boy with multiple difficulties.

He was born with a cleft lip and palate, and ectrodactyly. He has a thumb and a finger (roughly the equivalent of a ring finger) on each hand and the same on his feet. This is sometimes called "lobster claw syndrome". Initially she refused all contact with "it" and wanted nothing to do with "it".

She was surprised to see a broad support system of family and friends open up to help her and support her. Over the next several days she accepted him, and with her support group, helped him through 27 surgeries. A major shoe manufacturer creates shoes for him, for free, now. He is active in school and has many friends. Amazingly, after all his lip has been through, he still manages to play trombone in the high school band...

Without the help of her friends and family there is no way she could have managed. I hope that you are able to open up to your friends and family soon and that you are blessed with a similar support group (post flu season).
posted by Leenie at 9:41 AM on January 3, 2013 [2 favorites]

From the other side of things (friend, not parent), I can say that people will NOT be offended if you ask for help without inviting folks in and without letting them visit the baby. A good friend of mine had premature twins with no other complications, and for their first several weeks, she had a friend organize food and other necessities to be dropped off on the front porch by a rotating group from our church. Everyone was happy to help out and understanding that with a whooping cough epidemic going on, Mom was not going to check the vaccination records of every single visitor!

I agree with what's been said above that you do NOT need to tell people details if you don't want to, but if some help with food, diaper delivery, etc. etc. would make your life easier, give the task of organizing drop offs to one of your parents or to one close friend. People will be happy to contribute and it is totally understandable that they can't hold the baby!
posted by rainbowbrite at 10:41 AM on January 3, 2013

Do you have a friend or close family member you hate to tell good news to, because they're too practical and never just get excited?

My mom and I are those people. Good things happen, and we fret about how it will go wrong. Bad things happen, and we avoid asking questions. We handle the bureaucratic details, we act as bouncers so you don't get overwhelmed by the parade of well meaning friends.

Maybe it isn't your parents or your husband. But see if you don't have someone in your life who can be your dispassionate advocate. Someone who can sit in with the doctor with you, so you can get numb and emotional and break down and deal with the emotions, and not worry about the details getting lost.

I would send a mass message to friends and family: "We both appreciate that you are worried about us, and trying to support us the best you can. But we have found that what we really need is a lot of breathing room to deal with this difficult uncertainty. [Designated Advocate] has agreed to be the responsible adult in the interim. If you would like an update, or if you would like to know how to help, please contact them. We hope that you all understand, as we are so grateful for your love and support."

Best of luck.
posted by politikitty at 11:38 AM on January 3, 2013

Pick one person and only one person. Give that person any information you want anyone to have.

Have that person set up a Caring Bridge page or a Care Page and direct people that page.

Use this page to convey any and all information you want to convey about your baby, about you and your husband, including if you'd like company that night, or food brought over, or for someone to walk your dog, etc.

Right now, you don't have to answer any questions beyond ones from your baby's medical team.

I am so sorry this is happening and my thoughts are with you and your family.
posted by zizzle at 12:26 PM on January 3, 2013

If you want to be left alone at home, too, one thing you could do is to give someone access to your home and anyone wanting to drop food off can do so between 10 and 2 pm (or whatever hours you do not plan on being home), but that you do not wish to see anyone when you arrive home at 4 pm or whatever.

This can let people help you, but also means you're not ambushed unexpectedly by anyone.
posted by zizzle at 12:32 PM on January 3, 2013

Ooof. Best of luck to the mini-maarika.

treehorn+bunny has it:
I just want to make clear one thing: you do NOT have any obligation to tell anyone about this diagnosis unless you want to. Don't feel like you owe anyone an explanation for your behavior or what's going on.

My niece is handicapped and has quite a few health problems, and it's blown me away the questions that people ask about her. It took me a few years to learn that when folks learned about her handicap & started with the infinite questions that it was OK to pretty much blow them off. "Thank you for your concern. She's doing well in her program now" is kind of my broken record to any question that starts getting into medical territory. Very frustrating how many people will not take the hint & keep probing, but I'm working on the "if they are rude, I can be somewhat rude back and keep repeating the same thing" as my mantra.

Family updates: my mom is the designated kiddo-health-updater most of the time. We know to bug her first. It doesn't have to be your parents, but find one person who you can send just the details you are comfortable with other people knowing to, and have people contact that person. This point person does not need to know every detail.
posted by lyra4 at 1:06 PM on January 3, 2013

Yes, we had a lethal genetic disease diagnosed in our family last year. Trying to manage the gossip grapevine has been quite inefficient -- getting the news to someone we were trying to keep it from (which meant not being open with many people) and then not getting useful info to the wider range of friends -- some of which seems to be simply that they don't properly process the info they have been told. So I suggest you use a website, but not expect it to work 100% in getting people informed and out of your hair.

Taking a less involved relative or friend to medical appointments has been a great help as you can discuss what was said afterwards and pick up on things which might have escaped you in the worry. My file folder of all the paperwork and test results has been very valuable -- sorry, doctors do sometimes forget the small details.

Do keep up with your own post-birth medical checks -- being a carer is a responsibility that obliges you to do things you might otherwise let slip. You must guard you own health as an important protection for the baby.

The burden may feel impossible to bear, but you get better at doing your best, and letting the rest go hang. Learning to accept help gracefully has been a difficult lesson for me, and it is surprisingly hard to let go of imagined futures and settle for what you have. But it can all be done. What really matters is pretty obvious, and you just put one foot in front of the other...
posted by Idcoytco at 3:27 PM on January 3, 2013

Yes yes yes delegate. Apologies for sounding blunt and maybe crass, but think of this kinda like politics, you need talking points to shut down questions that you're not ready to answer for (oh my gods, I am so sorry for how difficult this must be) reasons.

Delegate the news to someone who can handle the situation, follow your wishes, stick to what you want disclosed, and give you advice on what people need to hear from you to not worry their heads off. Let your friends help you.
posted by desuetude at 12:06 AM on January 4, 2013

Feel free to severely limit or forbid the emotional vampire people. I had a family member who could handle one of the hysterical people who "absolutely had to see the baby! now!" take the baby for a visit in a neutral location outside our house and the person didn't turn up in the end, and I very happily refused any more contact with them and the baby. With the other hysterical person, we severely limited visits and I just blanked them out, pretending I had a headache. That person had been and now is helpful, but during a crisis just melts into woe-is-me drama, so I put up with it at the time for the sake of the long term relationship.

No-one decent is going to hold it against you that you are not able to welcome them in or appreciate or even use their help right now. They will understand and wait and come back when you ask for help - and do ask when you're ready. People really do want to help. Get a friend to co-ordinate help if that's easier.

The people who will be spiteful and grudgeholding about this are the kind of people you don't want or need around your child. It can hurt to see that their ego is bigger than your child's need, but it's better than being disappointed when you really need the support and they don't come through.

I used "The doctor says" to soften telling people they couldn't come over or whatever restrictions. It's also easier to have lots of hand disinfectant around for guests when they do come over. Provide masks if you want - they aren't the ones who have to go to the ER with a wheezing baby.

I also found it very hard for a while to hear good news about other babies the same age. I screened out a bunch of people on facebook and withdrew. I was happy for them but the difference between their healthy child and my very sick baby was too painful to handle right then.

The only people I really wanted to talk to were other parents in similar conditions. If you'd like that, ask your doctors or go online to look for parents and tell people you want to meet other parents like that - your friends-of-friends network might turn up people in similar situations.

I'm sorry that your family has such a challenge but also - hello to your new baby! and may he love and be loved fiercely and generously. You sound like protective centered parents - trust your gut.
posted by viggorlijah at 6:48 AM on January 4, 2013 [2 favorites]

Thanks, everyone. After fever-related trips to tandem ERs last night (one for the baby, one for me), I sent a message out to a couple friends for help (one is super assertive, the other is a social worker). They've signed us up for Meal Train and will get that going before my husband returns to work next week. My parents stayed with me in the ER last night and seem calmer and more understanding about the lack of answers at this point.
posted by Maarika at 4:09 PM on January 4, 2013 [4 favorites]

Some afterthoughts:
We haven't found people really wanting to go into detail. "The latest test results were good/The latest test results were bad." "It's a good day/It's a bad day." Those answers don't usually lead to follow up questions. If there is one, it is usually how long to the next major intervention, and that can have a simple vague answer.

I suggested it might be a good idea to use a website for bulletins. I have since wondered why that doesn't seem to fit for us, and think it is about not getting too medicalized. I think before this came up we didn't see the important difference between "a person, who happens to have xxxx" and "a xxxx patient" or even worse "a case of xxxx". We do little things just to fight back, emphasizing the person-ness, and hiding the medical side. The most important thing about your Peanut (or whatever you call them) is that they are your darling Peanut, the medical bit is just an unfortunate extra.
posted by Idcoytco at 6:16 PM on January 5, 2013

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