Cassiopia Camilla Jordan

I was recently given the opportunity to share my little girl's story of how the Newborn Screening saved her.  It took me a few days, but here it is, pictures and all!!

I’m not sure where to start with Casey’s story, as both my husband and I dreamt of her long before we met and married, but I suppose that I will start with her pregnancy.  Her pregnancy was filled with a variety of infections and accidents, but the biggest error made was in the Doctors’ calculations of how far along she was.  A few days before Halloween in 2006 my husband got some bad news concerning his father…so my labor started the night of Halloween that year.  The contractions had been off and on for a couple of days before they evened out and became more regular, I went to the hospital on November 1^st around 7 or 8 pm that evening.  This was, according to the doctor, 3 days before my official due date…which we came to find out was 5 weeks off, and not in a good direction.  When they got the monitor on me we discovered that the contractions were coming every 3 minutes like clockwork, so given that we were so close to my “due date”, the decision was made to allow everything to take its course and to have that baby.

After a long and exhausting labor, our little Casey was born at 4:29 pm on November 2, 2006…this is when we first noticed that something was not right with our little one, we didn’t understand all that they were telling us given that she was our first child, but we understood very clearly that she was not as healthy as we were led to believe before having her.  She was extraordinarily pale and non-responsive; the head nurse let me hold her for less than a minute and then ran her down to the nursery for oxygen.  She was under the oxygen hood for 6 hours or so, when she finally started to pink up.  The nurses fed her, wrapped her up, and brought her to me for a little while in the middle of the night after I asked and asked for her.  I was only allowed to have her for a couple of hours, before they came back and got her.  It took me 2 weeks to get her back after that, as the next day she was sent to Loma Linda University Children’s Hospital via ambulance and placed in the Neo-natal Intensive Care Unit. 

I vividly remember the paramedic bringing her down to my room in her small incubator on wheels so her mom could say goodbye for several hours before we could see each other again.  He took a couple Polaroid’s of her and gave them to me along with her first little hat, I told him to take care of my baby girl and off they went.  I stuck the Polaroid in the hat with a preemie diaper and carried it around with me and slept with it until I was able to take her home.  What they discovered at our local hospital was that she was unable to properly digest food and it distended her tummy to feed her.  They also believed that she wasn’t getting enough oxygen into her blood stream, which the respiratory specialist at Loma Linda said was nonsense.  By the time we made it up there she was in place and had been seen by 3 or 4 doctors.  We were told that her lungs were fully developed, which was a great concern because for the first time we were told that she was premature, and not just a little premature, 5 weeks premature. 

We were told many things over the next couple of days, starting with the massive quantity of tests that were being run, the fact that they were not allowing her to be fed and was instead on something they called TPN, and that overall they had no idea what was wrong with our little girl.  The next day was probably the worst for me, as that is when I went to the hospital and she had an IV in both arms and was taped all over and she looked terrible.  We were told why they said she was premature, and their anger at whoever saw the last ultrasound and determined that she was full term…as I had just had an ultrasound a few weeks before I had her.  The doctors there believed that she was in fairly good health and were really perplexed at why she was having so much difficulty.  This is when my milk came in and I decided to breast feed her for her sake…meanwhile I pumped every three hours to have milk ready for when she could eat.

Then Tuesday came and I got a phone call from her Primary Care Doctor, and he told me that her Newborn Screen had come back and her thyroid tests were abnormal, and he was insistent that I bring her in for more blood work.  I told him that she was in the Loma Linda NICU, and that is when he said OK and hung up the phone.  At this point we were staying at the Ronald McDonald house across the street from the hospital…by the time we made it over there they had already drawn more blood and it was being sent to somewhere in the Midwest for more delicate and precise testing.  In the meantime she was being given some Synthroid to get her hormone levels up so she could function.  I was told that she didn’t have the energy to eat by herself and couldn’t eat enough to sustain her because she had what is called Congenital Hypothyroidism.

This is where my ability to do research came in really handy, because when we weren’t sitting at her bedside I was sitting at my laptop trying to find out what this disorder was exactly and how it would affect her development.  The more I read to understand, the more I realized that our little Casey-Bug (as I came to call her) was a miracle!  I discovered that before the newborn screen was put into place this disorder was the single leading cause of mental retardation in children…I cried big tears that day as the realization of how lucky we were sunk into my mind and heart.  I didn’t know anything about the newborn screening, what it consisted of and why they did it, but from that point forward I determined that every woman I ever came into contact with who was pregnant would know how it saved my little girl!

Back to the story:  We spent the next week and a half sitting with her, praying over her, holding her, and finally they let me feed her.  There were at least 5 women standing over me watching as she latched on the first time…which is probably why I am not really shy at all anymore.  I was able to over-produce milk for her, as when she left the hospital we had to buy a cooler to transport my stock pile home.  I had already sent around 8 4oz bottles home with my mother the week before, and the nurses were telling me that I was taking up 2 shelves in their freezer!  Needless to say that when my baby needed me, I provided…just like a cow.  2 weeks to the day after she was born we were allowed to take her home, knowing that she would be on meds for the rest of her life, and with all the learning we needed to properly care for her.  When we left she was less than 6 lbs and only drinking 2oz of milk every 3 hours, but it was enough to sustain her and home she came!

While there because of the not being able to eat and poop properly she also became jaundiced and had to spend time under the UV light.  The doctors there had to blackmail the insurance company to get what they wanted:  They wanted her billi numbers checked for 2 days at the local hospital and the insurance company didn’t want to pay for it…so the doctors told them that they would just hold her there for another 2 days and charge them the standard $10,000 per day.  We got to bring her home and the doctors were happy as well.

My miracle Casey-Bug is now almost 6 years old and entering 1^st grade in a few days, and I am proud to report that she is smart as a tack thanks to the newborn screening and her Synthroid!  When I take her for her routine blood test every 6 months and to her specialist in Loma Linda I thank God for the many blessings He has blessed us with, but more than anything else I thank Him for the medical knowledge and technology that has made the newborn screening process a miracle in so many parents’ lives.  I have living, breathing proof that these small heel pricks are necessary for the overall well-being of children all over this earth!  

So there it is, my baby-girl's story of how she came to be ours!  Here's to you Casey, who is named after a constellation and her Grandmother...may you always be the fighter that you started out being.  And here's to the government for invading our privacy for the well-being of our children...may we always remember those saved by these "torturous" tests when we are busy screaming about how our government is invading our privacy!