Advocacy- Our Syphilis Story

Our story begins with a beautiful little 3 day old baby.  Like normal babies she cried when hungry and drank her bottles right down.  Fussier than most, we figured it was gas; so we added some gas medicine to her bottles after discussing it with her doctor.  She seemed to do a bit better, and after all- babies cry!  She soon cried for all strangers, and everyone for that matter except for my husband and I (daddy and mommy), and while other babies were smiling- the only time you could coax a smile out of her was when you told her that you loved her. 
At two months, she become even more fussy- would scream when you put a bib on her neck and took it off, and would scream when you picked her legs up to change her diaper.  Several times while picking her up if your hands were in between her shoulder blades and neck, she would scream out in pain.  At this same time, she got a small water blister near the crease of her hip in her diaper area and her skin on the bottoms of her feet and the palms of her hands become mottled and looked odd.  I brought her to the Dr, and was told she probably had hand, foot, mouth disease.  She would probably get over it in about two weeks, give her Tylenol, cold popsicles and formula.  I was told I must have missed a really high fever (this concerned me- I'm not a perfect mom by any means, but I don't think that I could have missed a high fever) and even though her feet and hands did not have sores, it didn't always turn out the same as everyone else's hand, foot, mouth disease.  Two weeks came and went, she was still in pain, still had mottling on her feet and hands.  More water blisters appeared in diaper area and the first one had popped and healed. The dr office was called about water blisters, and told not to worry- they appear many times for no reason.
Three and four months, the mottling goes away but still cranky, still only calms down for Mommy and Daddy, still in pain (think do I bring her to chiropractor- maybe her bones are out of alignment). She has an echo, and it is found she has a sticky heart valve.  Nothing to worry about, she'll grow out of it.  The water blisters have now got some consistency to them- and are starting to look like grey warts.  I show them and discuss this with nurse and decide to have them taken care of at her 4 month well baby checkup. 
I get a call that says that birth mother was positive for syphilis when she went in for a new pregnancy.  They suggest I get our baby tested.  I look up all of the symptoms of congenital syphilis on the computer- and it hits me like a ton of bricks.. she has syphilis.  I know it.  I don't need a test to tell me- everything makes sense, the mottling, that she didn't have a fever, the water blisters, the warts.. the runny nose that I just thought must be allergies like my son's.. the immense pain that she endured when being picked up, and changed..  And so I call and ask for a blood test, am told that there is no way that it is but they would humor me and give the baby the test.  We get the test the next day, and have her 4 month check up scheduled for the day after that.
At four month well baby check up, dr is concerned because baby is not smiling and generally all babies smile at four month check up. As I describe to him all of the symptoms of syphilis and he explains why it just CAN'T be, he then looks at the warts(which aren't actual warts).. and knows.. it is syphilis.  He has never seen syphilis, studied just an overview many many years ago in med school about syphilis- but knows.  He sets up treatment without even having a positive blood test back.  We go to the hospital and she has an injection of Bicillian, and must have two more, one a week for a total of three injections.
She has the injections (painful too) one a week for three weeks- everyday we see progress.  The first twenty fours after her first injection all she does is sleep.  Her poopy diapers smelled and were just nasty to look at- we figure that they were killed off bacteria and toxins.  Her lymph glands in the back of her head and her chest especially were like big marbles and I started to do a lymphatic massage several times a day.  Within three days the "warts" on her bottom turned bright purple and shrunk to half size.  OCY took pictures of the "warts" so that drs and OCY can use this as a teaching tool.  Syphilis isn't something that most doctors will ever see, so trainees were brought into the room whenever we had a dr visit or treatment.  Our daughter stops crying so much and at about 48 hours lifts her legs up in the air and starts singing to her toes.  We knew then that the treatment was having an effect.  She continued to get better- and started sitting on her own very shortly after the treatment.  She began to creep and then to crawl at record speed.
A month to two months later- I was still concerned- we had almost lost our baby to a misdiagnosis and I wanted to be sure that all would be all right.  I pushed for tests.  Everyone said that she looks great, the treatment worked and I should be happy with that.  I pushed more- and well, the squeaky wheel always gets the grease- the Lord granted my request for more testing and they did an ex-ray on my baby.  The test results came back that either she was being abused or had something strange with her bones like syphilis. They referred us to get a whole body scan where many of her bones were affected.  Rather than the typical bone reaction to syphilis- the Lord spared her from the thickening at the joints and the centers of the bones were thickened (think of the typical narrowing of the bone in the center like a chicken bone), our baby was literally "big boned" her bones were thick through the middle.  They sent us to Pittsburgh Children's Hospital where they ran tests and found out that she still had the syphilis.  We had to be admitted and she had a pic-line of antibiotic every 6 hours for ten days until the bacteria was eradicated. They did several tests to make sure that she didn't have any syphilis in the brain and to test the heart which could have been a result of the syphilis.
We found out that if she hadn't been treated the second time, the syphilis may have come back without any symptoms that time and within a few years our baby would have had an aortic hemorrhage and died without our knowing why.
Our baby is happy and healthy, she does still have a bit of a curvature to her arm bones (which don't affect her dexterity or movement at all) and a deeper voice (which I feel that God blessed her with a unique sound to use for His Glory).  We were able to adopt her this past spring and she is doing well.  She made up for lost time in all of her normal stepping stones- mastered walking sooner than most babies, jumps and runs with the best, and is just a whole and healthy little one that is nearing the terrible twos!
This is our story- Be an advocate- it pays to pray, push the drs, drive all those miles, pray, call about results, and study up on everything you can get your hands on.  Our family dr told us that we probably knew more about syphilis than everyone in the county- we were even reading up on all the studies and bone ex-rays from the 50s and 60s. You are with your child 24/7- you know when things just aren't right. It is ok to demand answers and to get second opinions- your child's life may be at stake.