Bringing Home Baby

After being home for a week, we had our first doctor visit. He didn't know anything, as we would soon find to be typical, but he didn't admit that he didn't know anything. He just said he would like to do some research and get back to us. After some thought, he called and referred us to a Pediatric Neurologist. It was here, three weeks after we brought home this love of our lives, that we heard for the first time the name of this thing: Erb's Palsy. Mama cried.

Mama cried so much these days. It was my all-purpose emotion. No one really seemed to understand this guilt. This disappointment. This outrage at virtual strangers - the Doctor, the Labor Nurse. Everyone who is responsible for making my birth experience positive and joyous. They didn't. And they didn't care, either. They just went on with their lives. But here I was, with a baby with a problem I've never even heard of, and no help in sight.

So, again, we are sent on our way, this time with a diagnosis and a "wait and see." We switched doctors again, and this time we were referred to a Pediatric Orthopaedist. He said: well, some kids end up fine and some don't. Let's wait and see. See you in 3 months. He gladly took our copay, and on our way we went, no closer to the heart of the matter.

See, none of the doctors we had seen, nor any of the ones we had yet to see, would end up giving us any more information. We learned about Erb's Palsy not from local doctors, but from other parents and lots of Internet research. Much of the online information states things like:

• 95% of children with Erb's Palsy will recover movement spontaneously, thereby eliminating the need for surgery


• Children who regain movement in their arm within 3 months, 6 months, etc., had an excellent chance of a full recovery with no surgical intervention.


• Once the child starts moving their arm, and their muscle bulk catches up, they will resume normal function of the affected limb.
  

While these things may in some cases may be true, in our case, they were not. And, I suspect, in many more cases than are reported, these kids need help. BPI can cause a myriad of complications throughout a lifetime, and you never hear it from your doctor because THEY DON'T KNOW IT.

These doctors are not stupid, incompetent, uneducated idiots. I'm not saying that at all. They just don't know. And so it became MY job to know. It became MY job to learn about Brachial Plexus Injuries and what I could do to give my child the best recovery possible. To allow her to dream beyond what we see now as her limitations. I wanted her to be able to do anything. I wouldn't let some tired, careless OB take that away from her. She was meant to be healthy and whole, and I decided to find a way to put her back together again.

So the Journey begins

Normally, children with a BPI are hurt because they are larger than average, take a very long time to deliver, or require special medical assistance during the birth, like a vacuum or forceps. None of this was the case for us. I was in and out of labor in 5 hours, and she weighed 7 pounds, 9 ounces. I pushed for about and hour and a half, which is more than average, but not unheard of. I know BPI moms who pushed for nearly 4 hours, and I'm sure there are stories of longer ones. No forceps or vacuums were used. I did, however, tell the labor nurse several times "she's stuck," to which I got a big fat "no she's not, keep pushing" type response.

When the doctor could be bothered to be present, she kept telling us she was tired. And then she would wander off to some sleeping place until I got closer. I would not see her again until the head was coming out, and the labor nurse ordered me to stop until the doctor came. Next thing I know, there is one very pretty, broken baby.

For the remainder of our hospital stay, our concerns for her arm were brushed off with reassurances that she was just bruised, her arm would return to normal in a few days. The pediatrician came and mentioned this Erb's Palsy thing, but he wasn't sure, and he told us we needed to go to the Children's Hospital. Something about nerve damage. Physical therapy. Again, the aftercare nurses acted like it was no big deal, mentioning that breast-fed babies always heal fast anyway. You can imagine my misery when I failed at that, too.

Though I was a crying mess when my OB came in for her routine visit the next day, she gave me a very cursory "it'll all turn out fine, get some sleep," and got the hell out of there. Would it have been so difficult to answer a few questions? Would it be so hard to be human, and to give a new mother resources to help her brand new baby? WHY did everyone keep acting like it was invisible????? I felt like I was losing my mind.

We were allowed to bring our little broken baby home with us on Christmas Eve. On the way, we stopped to see Santa. It was her first outing, and it was precious. You could see the joy in Santa's face at this lovely new life he was allowed to be a part of today. We took a picture, and we went home. I remember that moment. My daughter in a pink velour jogging suit, when she can't even support her own head. It's too big for her. A brown hat with stripes that looked so tiny when we packed it for her, to take to the hospital. It was too big, too. What a joyful day it was, to go home with my brand new baby. What a proud mama I was, am, will always be.

The List

Following is a list, probably ongoing, of everything I can think of to tell a new parent of a child with Erb's Palsy. This is a really good list, not just for kids with BPI (Brachial Plexus Injury), but for any new mother dealing with a child with an unexpected birth injury or condition. Please, anyone who reads this and can think of more, tell me and I'll add 'em to the list! Most of them are things I wish I had thought of to do at the time, and have missed the opportunity. The rest came from experience.

• Okay, mama, DO NOT PANIC! Lots and lots of kids born with a BPI turn out just fine without medical intervention.


• When you go to your post-partum visit with your OB, DO NOT allow them to brush off your concerns.


• DO NOT allow a diagnosis of Erb's Palsy or Brachial Plexus Injury if your child is uninsured at birth, but will be insured by an individual policy. Get insurance and get a diagnosis from your pediatrician. Don't forget to add your child to your group policy before the cut-off date.


• Take pictures of your child's injury.
  
• Keep a journal of all doctor's appointments, phone numbers, addresses, miles traveled.


• Go here. http://www.drnathbrachialplexus.com/ Make an appointment for an outreach event near you. You can meet the doctor in person, and for free. Seriously, no one else knows what they are talking about.


• Just because a doctor has a white coat, does not mean he knows everything.


• Just because your child can move their arm, does not mean that everything is okay. I'm sorry, mama, but it just doesn't.


• If you don't feel that your child is receiving the level of care they need, they probably are not. Mama knows best.


• Refer yourself to your state's early intervention program, or have your doctor do it. While most of these therapists won't know a whole ton about Erb's Palsy, most are willing to learn, and can at least show you gentle range of motion exercises that can make a huge difference in the recovery of your kid. We love our very capable Occupational Therapist from our early intervention program, and she loves our kid back.



• Don't forget to stop and smell the roses. Your baby will grow up so quickly, and they are so much more than their injury.

• Get a lawyer. Most malpractice lawyers don't get paid unless you do, so give it a shot. You only have two years to file.


• No, it is absolutely not your fault. Yes, it is the OB's fault. Get a new doctor.

A picture to inspire hope

Maybe a lot of parents would be embarrassed to let people see their kid with both their index fingers shoved up his or her nose, but this is one proud mama! What a miracle it is that my daughter can TOUCH her nose with her left hand, but she can actually aim her little left finger right into the nostril. Way to go, baby!

When my daughter was born, she could not move any part of her left arm, except for her fingers. It was sad to see her arm laying limply beside her while she played, and a lack of tummy time began to cause her head to flatten. She could not lay on the floor on her belly, because she could not use the support of her arms to lift her face off the floor.

My child was born healthy and alive, but still I grieved. The dreams I had for her all seemed impossible now that this unexpected thing happened to her. It wasn't supposed to be this way. And so I cried. For weeks. I did not enjoy this fresh new human being I had helped create. I apologized to her over and over, and I cried, and I did not sleep. I blamed myself. I wasn't meant to have babies, and this just proved it.

Eventually, though, you have to pick yourself off the floor, and decide to be the advocate your child needs. Eventually, you have to accept it and move on to the next step. Eventually, you have to realize it is not your fault, but you can help make it better. And, eventually, maybe that baby will surprise you, and shove both her index fingers up her nose.

Well. I don't know what I'm doing, really.

I don't know who this Erb guy is, but because of him, I have been challenged in my life in a way I never even knew was possible before it happened. My beautiful daughter was born on December 22, 2006, and our lives were changed forever. Of course, this happens to everyone who has a child. It changes everything. Just like those stupid Johnson's commercials say.

The conception of our child was not conventional at all. It took a total of 5 people, not including my husband and myself, to conceive this child. And that isn't even counting all the poor lab techs and, oh, I don't know, "fluid handlers" or whatever. You get my drift. So, we were so thrilled once we got pregnant, even it meant my husband had to give me a shot in my ass every day for the first 12 weeks. It was fine. our dream was coming true. We painted the nursey, went to all the appointments, and ate a LOT of food. We eagerly awaited the arrival of her, and her birth day came, 3 days before Christmas.

Sometimes, though, the birth of your child doesn't end up being perfect. Sometimes things go wrong, and it is apparently a fact of life. I didn't know it then, but it just happens sometimes. My daughter was born with a birth injury called Erb's Palsy. It is a Brachial Plexus (a nerve bundle in your shoulder) injury, and it can permanently paralyze the limb of a child. Major bummer. So, surprise, mama, here is your new normal. It's hard to get your head around at first.

Once you get over the shock of it all, you realize you are going to love this kid so hard it wouldn't matter if they didn't have a head, just like all parents who aren't psychotic. But, now what do you do? I'll tell you, because I never knew.