Wednesday, March 7, 2018

The Time We Were Investigated by DCF for Child Neglect

As for you, you whitewash with lies;
worthless physicians are you all.
Oh that you would keep silent,
and it would be your wisdom!
- Job 13:4-5

Just after turning ten months old, Molly fell off the bed one night while Nathan was out of town.  She escaped past my barricade of pillows at the edge of the bed.  Poor baby!  She was upset but not inconsolable.  After checking that she was still doing the things she does (clicking her tongue, saying “mama,” making kissing sounds) I nursed her back to sleep, and she slept until morning.

When she woke I was concerned, because Molly was unhappy, and was favoring her left arm.  Her underarm felt a bit different when I went to lift her, sort of lacking in resistance.  I called a dear friend who is a nurse to ask for advice.  She advised that I take her to be seen when our family practice opened later that morning, and that there was no immediate need to go to the ER.  It was a Monday morning, MLK Day, but fortunately, our practice was open.  I called and was given an appointment with a doctor, new to the practice, that we had never seen before.  She referred us for an x-ray, which we got taken immediately, and which revealed a fractured clavicle.  Poor, poor baby!  Guilty, sad Mama!

Nathan returned from his travels that evening, and complimented me on keeping my head on my shoulders -- not sobbing hysterically or beating myself up endlessly, but focusing on getting Molly the care that she needed.  As we talked about what happened, I remember saying that I hate that we live in a world where a tiny bit of me was afraid to take her to be seen, because you never know what a doctor might think when a baby has an injury.  He reassured me that the people at our family practice have known us for almost six years, and no one would doubt that I was a good mother who cared for my kids well.

* * *

Fast-forward to that Friday evening, just before 5 pm, when our home phone rang and it was for me.  The man calling said, "I'm calling from the Department of Children and Families.  We've received a report alleging medical negligence..."  

I'm sitting here now, weeks later, and yet the memory of that moment is a stark, clear one: the pit in my stomach, the disbelief that this could be happening.  I unleashed a slight outburst of shock and outrage on the DCF agent before bursting into tears and handing the phone to Nathan, who graciously took over the phone call.  There was to be an investigation at our home the following Monday morning.

* * *

Let me back up and fill in a few blanks here.  The truth is that I remember calling Nathan right after Molly's initial appointment as we were on our way to get x-rays, saying, "I had a weird feeling about the doctor we saw.  She seemed more concerned about the fact that Molly hadn't been at every CDC recommended Well Child visit than about the fracture."  It was true -- the doctor had looked at Molly's chart and said very dramatically, "WHO has been seeing this baby?"  Confused, I had replied, "She's a patient here."  The doctor responded, "She hasn't been seen here in MONTHS!  It is really important that she come to every Well Child visit so that we can weigh her!"  

Now, to my credit, I did not roll my eyes back into my throat, but instead responded with a smile, "I have a scale and weigh her at home."  The doctor did not seem reassured by this at all, but said, "Well, we also need to make sure she's hitting her milestones."  Again I smiled and said, "As a third-time mom I have felt confident in assessing that she's growing and developing right on track."  At this point, the doctor said, "Well, I'm going to follow you out to the front desk after this appointment and make sure you schedule appointments for all your kids," which seemed pretty dramatic to me.  Our older two children already had their yearly appointments on the books, scheduled since their previous physicals.  In any case, it all gave me an odd feeling at the time, but I was preoccupied with the fact that my poor infant daughter likely had a fracture and I pushed the encounter with that doctor to the back of my mind.

No one wants to be faced with the thought that taking a child for medical care will be worse than the injury.

* * *

That first Monday evening a nurse from the practice called me to deliver the results of the x-rays.  She advised me that these fractures are relatively common, and that all we needed to do was to safety pin her sleeve to the bodice of her clothing each day to limit her mobility and create a sort of a sling.  She also recommended a follow-up at Boston Children's. 

The following morning I called the nurse back to ask a few questions.  Was the follow-up in Boston so the x-rays could be read by someone more specialized?  Was there a chance she would need surgery?  Would they advise treatment more intensive than the safety pin?  Should I give her motrin if she was in pain?  The nurse reassured me that Molly would be fine and would heal quickly.  She also indicated that the follow-up in Boston (while something they routinely offer a referral for) wasn't necessary if we preferred to follow up at our local practice in a week or two.

Since lengthy rides in her car seat seemed uncomfortable for a baby with a broken clavicle, and since our oldest daughter also had a lingering cough that had been causing chest pain, I decided that avoiding unnecessary trips into the city was an excellent plan, and agreed to follow up at our family practice.

Molly already seemed significantly improved by Tuesday.  I held her, snuggled her, was careful what positions she slept in, and kept her sleeve pinned -- although she fought it and kept trying to crawl, pull herself up, and continue in all her usual tricks!  All seemed to be well -- or at least, I felt assured that it would be.  

* * *

That Thursday, I took our oldest daughter into the practice for her cough.  A year ago around this time she suffered a bout of pneumonia, and so when she had complained to me that it hurt to breathe deeply, I went on the alert.  Her cough was sporadic and not severe, but I still thought it was worth getting checked out.  At that appointment, no one at the practice indicated that anything might be amiss.  I had no idea that, as we would later learn, a report had been filed with DCF the previous day, and I would only learn about it the following day.  No one in the office mentioned making any attempts to follow up on Molly's care or to reach either Nathan or myself.  I took our five-year-old for a chest x-ray as recommended, and then headed home.

Friday morning was Nathan's day off from work.  That morning he was catching up on some paperwork and other matters, and found himself listening to several unheard voicemails from unknown numbers that had accumulated on his cell phone.  We were both sitting in the living room together when he got a very surprised and confused look, and said, "Babe, I think I have a voicemail from that doctor who saw Molly."  He put it on speaker so I could hear.  We were very perplexed, to say the least.  In the voicemail she said she was "Calling to make sure that Sarah was following up on Molly's care" ("Is this the 1950's?" I asked Nathan), and that she "understood that we might not be following up at Boston Children's, and that's okay..." but went on to say that Molly was at risk of her clavicle puncturing her lung, and that she needed to be seen again at the practice immediately for her arm to be properly immobilized.  She also said she understood I might be giving Molly Motrin (I wasn't, but it's what the nurse had suggested over the phone) and that I should absolutely NOT be doing this as it would impede her healing.  She concluded the voicemail, which had been left on Wednesday, by asking Nathan to call her back "by tomorrow."  Regrettably, this was now Friday.

We were quite confused as to why a nurse from our practice would give us such a reassuring assessment of the situation and such a low-key treatment plan, and then a doctor from within the same practice would tell us there was a risk of a punctured lung.  Naturally, this made me a bit nervous.  We were also completely bewildered as to why the doctor had called Nathan's phone, since I am the primary caregiver, the parent who takes the kids to their appointments, and the parent she had met at Molly's appointment.  No attempts had been made to reach me -- I had no missed calls or voicemails on my cell phone.  And come to think of it, that started to seem weird, because at previous times when our kids have been sick, someone from the practice, some friendly nurse or someone, has always called later to check in and make sure everyone is doing well.  Why hadn't anyone called me?

I immediately got on the phone and placed a call to our practice asking to speak with our primary care doctor so that we could get a straight story.  (As a side note, the wonderful primary care doctor we had seen for nearly five years had left the practice a year ago, and since that time, while we had been reassigned to a new PCP, we had actually had our appointments with an NP who is a lovely and wonderful woman, so -- in a humorous but perhaps not uncommon situation -- we had not actually met our new PCP).  Our PCP called me back soon after I called for her, and she was lovely over the phone.  She apologized for the miscommunications, and told us Molly was fine and would continue to be fine, and was not at risk for a punctured lung. She did say to go ahead and schedule a follow-up with a specialist, but said following up locally with a pediatric ortho in town would be absolutely fine; no trekking into Boston with three kids in freezing temps necessary.  I ended that phone call and immediately called Mass General in Danvers to schedule a follow-up for Molly.  

* * *

And it was at the close of that day, much of which I spent on the phone sorting things out with doctors and other doctors and insurance providers and such, that the DCF investigator called me.

It will remain in my memory as one of the worst weekends of my life.  That Friday night I cried, and cried, and cried.  I wept until my head pounded and my face was puffy.  I was overwhelmed by so many feelings: anger at that doctor, fear of the possibility (however remote) of having my children taken from me, embarrassment that it was somehow possible I could be the kind of mother who gets reported for neglect.  Nathan and I stayed up late into the night reading any information we could find online about what to do if you are falsely reported for abuse or neglect.  There were lots of frightening accounts online of falsely accused parents losing custody of their children for extended periods of time while cases were sorted out, and we were really scared.  

{We would later hear characterizations from lawyers agreeing that DCF is indeed guilty of overreaching at times in taking children from their homes.  The Massachusetts supreme judicial court has concurred with this and passed down a ruling in the past year limiting the way DCF functions -- comforting, I suppose, but comfort amidst alarming facts is only mildly comforting.  One doesn't have to look too far to find stories of parents currently going through complete nightmares like this, having had their children removed from their homes and needing to fight tooth and nail to get them back.}

I typed up a complete timeline of events while everything was fresh in my memory.  I called my parents, and they advised us to get an attorney, as we were thinking of doing, to be at the home with us during the investigation.  

We worked hard over that weekend, not only to tidy up our home and make sure that nothing whatsoever could be found amiss, but we also contacted four medical professionals and got signed letters detailing that we have always provided for our kids' medical needs.  {We remain grateful to these four people for being willing to do this.  We felt it was really the key to immediately disprove that there could be any validity to the accusation of medical neglect.}

Saturday night, after an unimaginably stressful and worrying day, we decided to order pizza and watch a movie.  What's a good cartoon option the girls might enjoy?  Nathan suggested Dumbo, and we were all in agreement that it would be a good choice.  Oh, how wrong we were!  As it turns out, the film I remember as being primarily about a cute flying elephant is actually about a baby being taken from its mother while the mother is locked up as an unfit parent!  Let's just say the girls weren't the only ones crying as we watched it.

* * *

Sunday, the day before the investigation, our three year old declared angrily, "You're a BAD MOTHER!" when it became apparent that breakfast was not what she had hoped it would be.  I remember thinking to myself wryly, "Perfect.  Just tell the gentleman who comes to our house tomorrow morning and it'll all be cleared up!"

It wasn't until the investigator arrived at our home Monday morning that we would hear in full the allegations against us.  I was accused of medical neglect; in other words, the issue was not the fracture itself (and there was no suspicion of abuse), but the allegations were that I was not following up on her care.  I was accused of giving my children improper medication, not providing them with general medical care, and not taking measures to immobilize Molly's fracture.  {There were other things said, too -- I don't remember them all now.  We have to write to DCF to request a copy of the full report now that the case is closed, at which time I'll be able to see everything.}

As he read the report, I was both devastated and angry.  I could not ever recognize the negligent mother the report described.

The doctor claimed in her report that she had left me three unreturned phone messages.  

We also learned that the doctor had filed her report on Wednesday, yes, the same Wednesday when she asked Nathan in her voicemail to call her back "by tomorrow."  Apparently it wouldn't have made a difference if he had gotten that voicemail a little sooner, because she did not even wait three hours after that call before reporting us.

In speaking to the investigator, we felt very able to tell our side of the story, and it was easy to prove, for example, that I had no missed calls from a doctor claiming to have left me three unreturned messages.  We played her voicemail on Nathan's phone, so the investigator could hear her saying it was "okay" if we didn't follow up in Boston, and other discrepancies in the story.  I detailed how I was doing everyone the nurse had told me to do for Molly's care, and he could clearly see that she was behaving quite normally.  

The investigator asked us a lot of questions, and tried to ask our kids a question regarding discipline in our home, as well.  He also asked to inspect the rest of the house, and specifically the sleeping arrangements.  At that time our lawyer spoke up and said he didn't think that would be necessary, since it was beyond the scope of an investigation alleging we had not followed up on our daughter's medical care.

I believe that in all, the investigator was at our house for about an hour and a half.

At some point during that time, I looked over to see our three year old had helped herself to a muffin I had left for her on the kitchen table, and was happily eating it ... off the floor.

Well, kids do know how to make a good impression.

* * *

Following that investigatory home visit, we breathed a partial sigh of relief, thinking it had probably gone as well as it could.  

The following day was Molly's pediatric ortho follow-up.  Everything I was told at that appointment corroborated what the nurse from our family practice had told me.  There was no concern expressed whatsoever about the nature of Molly's injury.  I was again told it was a common fracture.  There was no concern about my home care of her.  When I asked the doctor if there was a risk of a lung puncture, he actually laughed!  He and his assistant asked me where I had heard that could happen, as they only see that in extreme trauma such as a car accident.  When I replied that I heard it from the doctor who reported me to DCF, their eyes widened and they said in disbelief, "You got reported for this?!  I'm so sorry!" I was then told, "Any doctor who would report this injury or claim you weren't doing the appropriate care must not understand ortho at all.  She just must not understand.  She must not be informed." 

The doctor's assistant and I chatted briefly about how important it is for mandated reporters to have a good degree of common sense and discernment, and not to report frivolously on people, because of the serious impact it can have on a family.

The orthopedist said I could continue to immobilize her arm if I wanted to, but said that actually four out of five of the orthos at that office, himself included, do not believe clavicular fractures such as Molly's needed to be immobilized at all.  

In other words, a far cry from the hysterical claims of the doctor's DCF report.

* * *

After all of that, we waited several weeks before receiving another phone call from DCF.  This time, the case worker was following up because, when he spoke further with the doctor who reported us, she told him that we co-sleep with the baby.

He asked me over the phone if this was true, and I replied that yes, it was.  {It had not come up in the investigation at our home specifically, but I suppose we thought it was somewhat obvious given the baby had fallen out of the bed in the night.}  He then told me that while cosleeping "doesn't technically fall into the category of neglect," it is extremely dangerous and he would be sending me pamphlets to read and making a note in my file.  

It's still so surreal to me that I have "a file" with DCF at all.  

I started to say to him that unfortunately, many families he may work with would have risk factors making cosleeping unsafe such as alcohol or drug abuse, but he interrupted me to say that it is equally unsafe across all kinds of families and all lifestyles, so at that point I realized it was best not to discuss it any further -- although for the record, I still believe that cosleeping has been a wonderful thing for our family, a true sanity-saver, and if anyone thinks we shouldn't do it, well, we invite that person to come put our baby back to bed.

every. forty-five. minutes. all. night. long.


* * *

After that, DCF called some of our babysitters to check up on us, just to be sure that our humiliation was complete!

We received a letter in mid-February saying that our case had been closed and the allegations were marked as "unsupported."

We are relieved that we can put that behind us, and now we are planning to bring complaints to our {soon-to-be-former} doctor's office as well as to Lahey in general.  I believe there is also a way for us to file a counter-complaint to DCF alleging that we believe we were reported on vindictively so that future reports this doctor may make might be evaluated closely before action is taken.  These are the fun things we get to learn about now!  But we think it's important, because the more we learned about our situation, the more we realized there was really no other conclusion to draw but that the doctor who filed on us was either an unqualified doctor or a person who simply didn't like other personal choices our family was making.  The facts as we know them don't allow us to understand it any other way.  No second, third, or fourth opinions we sought from other medical professionals corroborated the "facts" the way this doctor presented them to DCF.  

* * *

In the days following the investigation, I wrote a little "personal impact statement" to eventually submit to our family practice:

"We can hardly begin to express how this experience has shocked and confused us, when we thought we were known and cared for at our family practice of nearly six years.  We now feel fearful and distrustful of the doctors with whom we thought we had a mutual relationship of trust.  Our friends who are aware of our situation are terrified at the thought they might ever find themselves in these circumstances without so much as a phone call being made before a report was filed.  Many of them have expressed their intent to leave {this practice}.

"In the days leading up to the investigative home visit, instead of having ample restful time to hold and care for our baby, we had to retain an attorney, spend time and money making sure not a single thing could be found amiss in our home, and contact multiple medical professionals to obtain letters attesting to our longstanding exemplary care of our children.

"From the time I first received the call from DCF, I have been having difficulty sleeping.  I have felt literally sick to my stomach and had episodes of shaking from anxiety and shock.  Instead of being cared for as a family by our "family practice," we have been victimized by a doctor there.  We were not treated fairly when with no probable cause whatsoever Dr. ________ set circumstances in motion that will have long-lasting effects on our family life.  Furthermore, we have learned that another medical professional at the practice vouched for us to Dr. ________, saying she should have no concerns whatsoever about our family -- yet still Dr. _________ chose to ignore the expertise of her colleague who knows us and has seen our children several times over the past year, and filed a report in direct opposition not only to the medical facts of the situation but also in opposition to the knowledgeable opinion of her colleague.

"As we try to make sense of this situation, we can only conclude that Dr. ________ is an unqualified doctor, having made hysterical claims to the DCF in direct contradiction to the opinions of every other medical professional, or that she has targeted us based on other factors she may have seen in my children's medical files, such as the fact that the children are not in public school, or the fact that we co-sleep, or the choice (made together with our longstanding family doctor) not to follow the CDC-suggested visit schedule to the letter."

* * *

Does that all sound really dramatic?  Maybe it does.  It's hard to explain that kind of fear.  You might think that being investigated by DCF really wouldn't be a big deal, because if you're not guilty it'll all work out fine.   And I get it.  DCF does good things for some kids who are truly in traumatic home situations and need help.  And they are obligated to follow up on the reports they receive, of course.  But when you're the one being investigated, the emotions surrounding it get pretty confusing.  It is probably hard to imagine if you haven't been through it, or at least had the fear of something like this happening cross your mind.

Or maybe you get it.  Maybe you can imagine the terror when you realize that you're not in control anymore -- that someone else gets to come into your home and decide if your life, your choices, your decisions, your care of your kids is acceptable or not.  

It's a really scary place to find yourself, I can tell you that.  Even if 90% of you believes it'll all be worked out and anyone will be able to see it was all a misunderstanding, there's at least 10% sheer terror.  I may or may not have been mentally considering an escape plan across the border to Canada, should things become dire!

* * *

I've learned something, though, and I think it's really important.  I think doctors and parents need to have some serious conversations about what is really happening in the medical world.  Who is in charge?  What does it mean every time you are asked to preemptively sign a consent to treatment form on behalf of your child before they are even seen at a visit?

All this time I've been taking my kids to the doctor viewing myself as holding the proverbial reins.  Yes, I want their expert opinions.  Yes, I want to know what they see, what they think.  But I thought it was okay that sometimes I'd opt not to give the antibiotics, but to try something else first, for example.  That, after extensive conversations with the doctor who knew me and my kids best, if we decided to skip a Hep B vaccine, for example, then that was our decision.  That sometimes we'd take into consideration several medical opinions before coming to a conclusion.

Now I'm beginning to realize that some doctors may view the scenario quite differently.  Perhaps they think they are in charge, and if they don't think you're jumping through the right hoops, well, they're going to make some phone calls.  And if this is the medical climate in which we live, I think all parents need to know about it.

* * *

So there you have it.  The story of that time I was accused of neglect.  Here's hoping it's the first, last, and only time!  I suppose the doctor who reported us would tell the story differently, but this is our story.  

Through it we felt surrounded by the love and support of family, friends, and those within our church families.  Nathan and I must have said to each other a dozen times during those difficult weeks, "What do people do during times like this if they don't have a church?!"  We are immensely grateful for the ways we were upheld with advice, support, love, and prayer.  We are critically aware that we had resources and support at our fingertips that not everyone facing this kind of event has access to.  

* * *

Do you know what the legal definition of neglect is?  It's a failure to provide "minimally adequate" care for your children.  

At first, when I received the phone call alleging neglect, having that piled on top of my normal amounts of "mom guilt" was almost more than I could bear.  Not only should I probably read to the kids even more than I do, or take them to museums more often, or be more patient with them at all times, or parent them more perfectly, now -- now I might actually be considered a truly neglectful mother?!

But then Nathan read me that definition.  And he laughed.  And at some point, I think I'll be able to laugh, too.

If I've learned something from all of this, perhaps it's this: I'm actually doing an okay job.  And if anybody tries to come between me and my kids, I will fight for the right to continue to love them to the very best of my ability.  I am far from being the perfect mother I would like to be, but I believe I'm the very best mother my own kids could possibly have, simply because they're mine, and I love them like crazy.