Jarom's CDH SUCCESS Story...

May 27 - October 18   2001

May 27 2001 - Jarom makes his first movements.


June 20 2001 - At the 22 week ultrasound, Jarom was diagnosed with left sided CDH at a Doctor's Clinic.  In a panic, we called a family friend, a Radiologist, and had him perform another ultrasound.  He confirmed that it was a Left Sided CDH.  


June 26 2001 - We went to University of Washington a few days later and had a class 3 ultrasound, echocardiogram and an amniocentesis.  CDH was again confirmed and no other genetic abnormalities were present.  Tri Panel and FISH were negative. We found out he was Jarom.  UW discussed the 'options' with us.  They were leaning heavily towards abortion without saying as much.  I recall being very angry and asking if they were going to be part of the solution to this problem.  I was told that in Philadelphia, Detroit and at University of California San Francisco, experimental surgeries were being performed.  Detroit studies were closed.  I emailed UCSF and got a reply that day.  


July 11 2001 - We flew down to UCSF for a Class 3 Ultrasound, echocardiogram and to meet the fetal surgery team.  We also talked to a Social Worker.  In hind sight, I feel we were being evaluated mentally to handle what was to come. We were informed that we could not participate in the trial because of placenta previa.


July 12 2001 - Flew back to Washington State, home.


July 13 2001 - Our family friend performs ultrasound to establish a baseline for placenta previa.  Later, we went to Children's Hospital in Seattle to discuss delivering there without fetal surgery. We didn't really learn anything knew.


July 20 2001 - Family friend performs ultrasound to assess placenta previa.  Placenta previa is ruled out (barely) and he calls Dr. Craig Albanese at UCSF and sends the pictures.


July 21 2001 - UCSF notifies us that we are accepted into the trial.  A lottery, the trial had 3 possibilities.  1) You go home and have your child at Children's in Seattle.  2) You go home and come back to deliver at UCSF.  3) You have fetal surgery for tracheal occlusion and deliver at UCSF.  I prayed for #3 based on what I was able to put together from a limited amount of information on the internet.  At the time I found 3 data points.  LHR .9 = 0% 1.25 = 90% 1.4 = 100%.  This made a horrible curve.  Jarom's LHR was .95.  The LHR was determined during the July 11th appointment at UCSF.


July 24 2001 - We drew card #3.


July 30 2001 - Back to UCSF, tracheal occlusion is performed using an aneurism type balloon.  I would later have it.  It is 1/4th the size of a pea.


August 2 2001 - We move to the Ronald McDonald House in San Francisco.


Mom stayed in bed to increase the chances of going longer in term.  We made a trip each week to UCSF via taxi for ultrasounds.  Each time you could see the heart move to the center more and more.  The lungs secrete fluid during development and this causes the restricted lung to increase in size.  As I understand it, DNA says build a lung X size and it does in a smaller space, folded over on itself.  Unfortunately, blood vessels required for air exchange won't develop in reduced proximity to eachother.  By 'blowing the lung up' more blood vessels develop and the baby has a better chance at survival once it is born and should have a better quality of life.


August 28 2001 - 730 pm, four weeks and 1 day after tracheal occlusion, labor commences and Jarom is born at 3 lbs 5 oz, 16 inches long.  The battle was on...


October 18 2001 - We all went home.