The story of IP in our lives

This is in no way meant to describe a "typical" scenario of IP, because there are none. I merely want to reassure you that you are ok in feeling the way you do right now, whatever way that may be.

She was born on Friday, August 23rd, 2002 at 5:22 pm after a great pregnancy and an even better labor and birth. Upon examination she was found to have about 10 blistery type pustuales on her left leg, that ran in a straight, linear pattern. Several physicians and nurses examined them, but could not determine the diagnosis. Guesses ranged from Herpes and Impetigo, to a benign newborn rash, and no one seemed really too concerned. After discussing it with our pediatrician, she too decided that she would look at them the following day but was not overly concerned. Call it mother's intuition that I, however, was.....

The Doctor looked her over on Saturday and determined, she looked and acted healthy, aside from some "minor" jaudice. We could proceed with discharge on Sunday, the following day.

We left the hospital around 5:00 pm that Sunday, a little more afraid than we had been with our first child Willow. The night went fairly normally except for some fussiness and her need to nurse constantly (this was from dehydration due to jaundice, not IP). When I awoke the next day, she had developed some type of new rash on her arms and torso. I immediately felt that these too would eventually turn into the blistery substances on her leg, although when I called her Doctor, she disagreed.

After much urging , the physician decided that Kateri was to be re-admitted to the NICU for examination and testing. We packed in a fury, me crying, my husband confused, and headed back to the hospital. We sat in a room in the ER, with the windows marked "contaminated, use gloves" watched helplessly as more Doctors poked and prodded our 3 day old baby. They searched their memories and scratched their heads. They decided to admit her and begin a rash of tests and treatments for the "worst case scenarios."

The tests began that night, and were unending, as were the still unanswered questions. Spinal taps, IV's, bloodwork, antibiotics. I was emotionally and physically raw, and no one seemed to be working hard enough to find a diagnosis. It was downright frustrating and I was growing more and more angry that we still, 3 days into this, had no clue as to what the outbreak of blisters were. The rash that had appeared prior to being admitted also erupted into blisters as well, and once again, I was losing faith in medical science.

I finally fought to get a dermatologist to come into the hospital on consultation. He determined that the blisters needed to be biopsied immediately, although felt that there were no major issues. We were told that it would take another 5 to 7 days to get back the results, and our hearts sank a little bit more, not knowing how much longer we could fight the daily and nightly battle. The separation of our family was increasingly unbearable, and the exhaustion and depression were rapidly wearing me to a complete mess.

I was approached by the head neurologist who stated he had received some preliminary reports on Kateri's pathology. He seemed upbeat, and when I asked if he wanted to go to the consultation room, he said that the NICU nursery was fine. I felt confident that this really must be no big deal right?

As he read from some paper, it basically sounded like this; "Incontinentia Pigmenti, X-Linked Chromosonal Disorder and Mild to Severe Cases involving the eyes, teeth, hair, and skin and Central Nervous System, blah, blah, blah...." (Keep in mind that he had the compassion of a toad and the patience of a child with ADHD.)

I had become a boxer in a ring taking blow after blow, punch after punch as my world came crashing down around me. The other parents in the NICU watched as I slumped into a heap on the chair and sobbed "Oh my God, Oh my God, please no..." A post-partum mommy, terrified, alone and horrified by the words that had just been spewed at me, with no direction to turn and no one to comfort me.

We were discharged less than 24 hours after the diagnosis with scribbles of Doctors notes, future appointments to specialists and our beautiful little baby. I remember watching the other parents leaving with their babies and secretly hating them for looking so happy and rich, as if they had no cares in the world. I was swollen eyed and in shock, and my husband was pale and crushed. It seemed as though our dreams had been shattered.

In the days that followed, we attended Doctors appointments, but ended up explaining IP to them (I had a crash course on the Internet). I vowed about 3 weeks into this maze of confusion, that I would never allow another parent to face the spiral of emotions alone. Never let another mother face the unknown without at least another hand to hold her, shoulder to cry on or ear to listen, as she too, faced this unknown.

No matter how different each of our stories may be, we all share one common feature: Every milestone is a celebration, every smile is a gift and every day is a new one that may be different than the one that came before it. Forever hurled into a strange space of altered reality.

I embrace you with support and compassion and will do everything I can to assist you on your families journey, and help heal the pain in your heart. Everything that you share will remain strictly confidential and you are free to share whatever concerns you have. I am glad you have found us!