Last month I attended a very special birth. It was actually my first "official" birth as a Midwifery Student/Apprentice. You can read about it here.
Kathryn indeed is a very special baby. She is so precious and tiny and a reminder to all, well at least to me, that God has created all of us thoughtfully, purposefully, and in his own image.
A friend of mine and fellow blogger were discussing the wonderful blessing and protection from this world that a child with Down Syndrome gets from Our Creator. There is a train of thought out there that those born on this earth with mental handicaps were the bravest and most revered souls of His Army. When he chose to put them in this earth with all the temptations of satan and sin they were given the protection of this "handicap" to shield them from the seduction and easy enticement the rest of us are subject to. I like this train of thought.
Anyway, two weeks ago Kathryn was desperately dehydrated. She was not nursing well, had a fever, and was becoming very limp and lethargic. Chris, the midwife I work with, called me to tell me she'd been out to see them and recommended they go to the children's hospital in the big city about an hour from their home. She was concerned that Kathryn would live through the night.
At the time, I didn't understand why they would even think twice about going. If my child was sick AND my midwife suggested I take my baby in, I'd be flying out the door ASAP, do not pass GO, do not collect $200, if you know what I mean. Let me tell you, God has a way of humbling our hearts when we judge like that. In Part 2, or 3, of this story I'll explain how.
I told Chris I would go up and see them to talk about going to the hospital. I took with me 12 oz. of liquid gold that my friend laurazim had in her freezer, along with another 9 oz of frozen breastmilk and 5 oz of fresh.
I was about 100 yards from their house when a car with an Amish man in the front seat passed my car and I knew it was them. You just don't see too many cars with Amish riding in them.
I pulled into their drive (if you can call it that....mostly buggies pulling up in this "drive-way") and their eldest son came out to let me know that they had just left for the hospital. Praise God.
I called Chris right away and she said The Driver (someone the Amish can hire, for an expensive fee to drive them) had called and told her. I asked if they would like me to take them instead since I was there for Kathryn's birth, know hospital lingo, and can advocate for them. We met at a gas station and transferred them to my *free* car.
The drive in was all talk about thoughts on living in the big city.....the traffic, the noise, etc.
Ervin, Kathryn's dad, commented on how people say that maybe it's unsafe to live so far out in the country where his house is away from all the "conveniences" and "safety" of the city. He said at least he can let his children play outside and not worry they're going to run into the street and get hit by a car.
I told him I don't enjoy being able to put my hand out of my window and touch my neighbor's house, let alone dealing with the never quiet, never dark nighttime musings in a city like that one, where I lived for almost 15 years before moving to my current how.
"That's the truth," he says.
When we finally got to the hospital there were raised eyebrows and side glances all around at the antiquated Amish couple and their baby coming in. The receptionist asked for the baby's name and searched her computer.
"You'll have to fill out these forms. She's just so new that her information isn't popping up in our system yet."
Umm, no. She's not in there because she was born into the comfort of her parents arms, not into a hospital room. But we'll get to that later.
We didn't even get a chance to sit down and look at the forms when the triage nurse called for Kathryn.
They took her temperature, 102.3 axillary, and whisked us back to an exam room. They took a detailed history from Ervin and Rachel and hooked her up to monitors. I chipped in whenever necessary with details from the birth. Her heart rate was in the 190's (normal is 120-160).
The pediatric resident in the ER immediately wanted to do a blood draw, catheterize her to test her urine for infection and do a SPINAL TAP.
WHAT??!! She's two weeks old. She doesn't have meningitis. She's dehydrated. Give her some fluids. Hello!
"On any baby under two months old with a fever we HAVE TO check their blood, spinal fluid, and urine and assume infection in one of these places as the cause for fever."
I quickly pointed out to Rachel and Ervin that they don't have to do anything. The hospital's protocols recommend they do these tests, but they don't have to consent to anything they don't feel comfortable with. The resident left the room to let us talk.
I went over B.R.A.I.N. with them - The Benefits, Risks, and Alternatives to those 3 tests, what does your Instinct tell you, and what happens if we do Nothing (not really an option here, but part of the discussion nonetheless).
In this case, we needed to ask more questions. What more information would you get from a spinal tap that you couldn't get from blood? Do you really need urine? Would you get results any faster from either of these places than from the blood?
I also called Chris right away to gauge her perception of the "have-to's". I can still hear here say in a shocked and WTF kind of voice, "Spinal Tap!? What do they need to do that for? Give her some fluids."
Turns out they won't get any different information from the spinal fluid. Just checking for the same bacteria as they would in the blood. Would it change the antibiotic they give? No, just a higher does. Would they get the results back faster? Nope. It's gonna take TWO DAYS to grow cultures from each.
This is where they tell us that they are planning on giving her the antibiotics anyway as a precaution while they wait for the cultures to come back. Well, if you're going to give the antibiotics anyway, then we really don't need a lumbar puncture now do we? And a catheter? She's dehydrated. There is no urine to speak of, so let's just risk making her incontinent by inserting a catheter into her already collapsed urethra, shall we?
Did I mention this is a teaching hospital? I'm starting to think that maybe this is just too good a "teaching" case when every resident and their mother are coming in to see the Down's Baby born at home without a "doctor" who's now sick at 2 weeks of age.
And I am starting to understand the reluctance to come to the hospital. It has now been almost 4 hours since we arrived. She still doesn't have an IV. She hasn't had anything to eat in almost 20 hours. The residents are asking stupid questions and trying to talk Rachel and Ervin into the spinal tap.
"Did she get Vitamin K and Erythromycin ointment at birth?" Rachel looks at me and shrugs. I tell the doc that there was no indication for Vit K as there was no birth trauma to Kathryn and no signs of bleeding or bruising. There was also no history to indicate Erythromycin ointment.
Fact - Erythomycin ointment is smeared into the eyes of newborns to protect them from the transfer of Chlamydia or Gonorrhea to their eyes from their mother's vagina. If mom doesn't have either of those STDs then there is no medical indication for this procedure. It was instituted by many states as "mandatory" for all babies as a prophylaxis for public health reasons. I.E. it's easier, and cheaper, to just assume all mothers have an STD and treat all babies than to counsel moms on an individual basis.
So when I told the MD there was no history to indicate E-ointment, I was politely trying to say, "They are Amish. Neither of them are sleeping around. They have only slept with each other for their entire lives. She has 10 healthy babies at home, all born outside of a hospital. She doesn't have any sexual risk for STDs and it would be insulting for me to have to explain this in technical terms in front of her and especially to you."
I pipe up again with the "hey, she hasn't had any nutrients for 20 hours, what-say-we skip the chit chat and get her some fluids?" talk and the attending physician comes in and *finally* decides to start the intraosseous infusion. I just lost you, didn't I?
An intraosseous infusion is like an IV that is put into a bone to infuse the bone marrow as opposed to a vein. This is especially useful on an infant, notably a dehydrated one, as their veins are almost always too tiny to access and, in the case of dehydration, probably collapsed. You drill a little hole in their tibia and insert the IV line there. It's not so bad really. Babies bones are not as hard as yours and mine. They are still very cartilage-y (is that a word?). *from what I learned that I always wanted to know in IV-tech school, graduate 2005
After a bolus of 60 cc's of saline (which is a lot for a 6 pound little girl), it was like we had a completely different baby on our hands.
Her hands and feet were no longer purple (her body had shunted all her blood and fluids to her vital organs to preserve their integrity, but now her body allowed fluid to circulate everywhere). She was breathing better. She was rooting. She opened her eyes a little. Her heart rate dropped a little and was closer to normal.
It was nearly midnight. They finally got the blood draw and sent it over to the lab. They put antibiotics into the IV. I began feeding her the colostrum with a syringe dropper since she was still too weak to nurse. Talk of the spinal tap continued. A radiologist came in to do an X-ray of her lungs to see if they were infected. The docs kept telling Rachel and Ervin that she could really be really sick and they need to test her.
Around 1:30am my husband informed me that I need to get home to My Lovey, who needed me. I had to leave but told them I'd be back in the morning. They were certainly going to admit her and keep her overnight for fluids, if not for a few days. She needed to be hydrated and regain her strength.
The receptionist guy came back and asked for her paperwork. I asked Ervin if I should fill it in for them. He said, "Go ahead. I don't understand any of that stuff and I hope I never have to." Well said.
All I could give them was her name and address. No SS#, no phone #, no insurance #, no race/ethnicity, no employer....she's a baby duh, no work or cell phone #. Mom and dad are "emergency contacts" and they don't have a phone either. What simplicity to only put in her name, address, and date of birth. Is there really anything else necessary?
I gave Kathryn a kiss, Rachel a big hug, and Ervin a handshake.
On the way home I called Chris to fill her in and vent about the care they received.
I prayed. And hugged my own babies tight.
*more on this to come....at least a 2 and 3