Reviewing medical records

[otheramerica]

Did any of  you review your child's (children's) medical records? My son just turned 2. He was a full term birth in a free-standing birth center. He turned blue and had poor breath sounds about 30 min after birth. He was transferred by ambulance to a local NICU.  Turns out he aspirated so much amniotic fluid and blood (no meconium though) that his lungs never fully inflated. He was given surfactant and placed on a vent for 3 days. We only had an 8 day stay overall and have had no health problems since then.  

I'm in weekly therapy for an anxiety disorder and had some PTSD symptoms for about 8 months after Paul's birth. I had a miscarriage at 11 weeks of a surprise pregnancy back in Dec 2011.

 I'm not sure if my desire to read these records is some sort of crisis or an actual desire that I should "indulge".  I scheduled an appt to go review them next Tues. For those of you who have done this before, any tips/suggestions? Anything you felt that you weren't expecting? Did you find reading the records to be helpful?  Thanks!

[heatherdeg]

Oddly, I've never seen my bio son's birth records but I've seen them for one of my foster kids plus most of them for my adoptive daughter.  The thing that's odd about that is that my bio has been the one with the most significant issues.  

I feel like you're never really given the whole story.  But I would caution you not to feel immediately deceived--because you could and in your heightened state of anxiety, you might.

One thing I really "got" over the years was that in a hospital setting, sometimes it's not clear whose job it REALLY is to tell you something (in some hospitals) and in other cases, they generally give you what you really need to know.  I've been in the position more than once where what THEY feel is "need to know" (or rather, NOT need to know) conflicts with MY opinion of what I need to know to effectively deal with or advocate for the kids.  But I really do feel that a lot of that time, it's truly difference of opinion (and many times, research).

So prepare yourself to see things you didn't know and feel betrayed.  But realize that their idea of what you NEEDED to know may have been truly and honestly just different and genuine desire not to upset you with things that they honestly felt wouldn't need to be known for long-term care.  They might've been wrong about that, but they don't always do that intentionally.

Hugs, mama.

[Alenushka]

You can get records in their entirety from the Medical Records upon signing a release form. You might have to pay for the copying costs. 

Then read at your leisure at home.

However, since the aspiration happened  at the birth center, it would make more sense to get their records (assuming they kept them) as well.

Hospital have stick guidelines about record keeping. I do not know if the same applies to free standing centers.

[Ratchet]

I got my DD's records from her hospital of birth.  We got very detailed discharge summaries from the NICU at the hospital she was transferred to, and had felt pretty involved in the process all along there and wouldn't expect any new info.  But her birth was the part that I had questions about- her initial resuscitation didn't go very smoothly and it's where I had the most questions.  

I was sort of underwhelmed by the info.  I didn't get the minute-by-minute nurses' notes, which may have provided more info or maybe not.  I got the reports from the physicians.  It all boiled down to nothing very interesting.  

I had always been planning on getting the records but it took me a few months to get around to it.  Nothing in particular triggered it.  I would say there's no harm to wanting to look at them, and just be prepared that it will bring back the scary feelings of those first days, and check in with someone about how you're coping with it afterwards.  In reviewing things like her initial awful blood gasses it was probably the first time I realized how close to dying she could have been.  I have an odd amount of faith in the healthcare system when it comes to major health problems (like, I don't think western medicine has much to offer a sinus infection, but if I'm on death's door I would assume the doctor could fix me).  So to see that despite there being a bunch of competent doctors there she could have died anyways was sad and scary.  But she was already a healthy baby at home by the time I saw that.  

[KAT2006]

Just my two cents...Aspiration is aspiration, it really stinks! Whether it is amniotic fluid, blood, or meconium, the lungs don't like anything in there. It's like a paper cut, the day you get it you look down and say..oh I got a paper cut. The next day you wake up and it's red, inflamed, sore. The lungs respond the same way with the same inflammation process, needing support with breathing, antibiotics, nutrition though IV's and milk, and time to heal. The aspiration is no one's fault, the NICU team must respond and help your little one with the situation that was present LONG before he arrived in the NICU. Healing from any aspiration is a slow process, I have seen a bad mec aspiration that took 3 months in the NICU to heal from. So instead of focusing on what happened in the NICU, my suggestion is to focus on what you did to get your little one home as fast as possible. Pumping, skin to skin, comforting, being willing to trust the people who have spent their life training to help your little one in need. You did beautifully, and your little one responded to that. In the end, that matters much more than focusing on if your little boy got Ampicillin at 8pm vs 8:15, and what is vent settings were and what his blood gasses were. Just my two cents. :)