Newborn Testimonals
(NOTE: Names changed to protect privacy)

“My first child Kelly had a "normal" ultrasound around 24 weeks in her mommy's tummy.  About 35 weeks they thought the baby felt small, so they sent us for another ultrasound and then the world seemed to fall apart.  The doctor's gave us poor statistics (likely death) and all kinds of possibilities to what had caused it. They told us she would weigh less than 4 pounds, she came out at 6.5 pounds. She spent 11 days in the hospital getting her lungs developed.  Dylan, who is now 10 months was followed very closely throughout pregnancy.  As late as 28 weeks, he appeared "normal" and they knew what they were looking for.  Two and ½ weeks later, an ultrasound revealed a dramatic reduction in amniotic fluid and we entered hell once again.  The specialists told us that this disease "tends" to develop in the early third trimester, but I believe that is only an opinion. Because Dylan was followed so closely, he had huge advantages over Kelly (as her illness came as a complete surprise).  He spent 9 days at the hospital before coming home and has done so good since.  ARPKD follows such different paths even in the same family.  Don't loose hope.  One thing I have learned is to question everything thing the doctor's say.  I never take what they say at face value.  My wife Shelly says I give them a hard time and I agree.  They know if they are not on the ball, I will hound them until they do what they should do.  Now they know us and us them, and we are becoming a team.   Doctor's are really gifted and smart but they also look after 100 -1000 other kids.  That is why we as parents have to ask and demand results if necessary. 

Kelly is now 4, beautiful, energetic and the destroyer and all evil dragons and bad guys (i.e. me).  They could not have been more off.  I know the bad times are not too far off, but I’m amazed at what we would have missed if we had listened to the doc's.”

“What a day.  I know everyone remembers Columbine. I have been thinking a lot about that day and it is really surreal still. I had gone to my mother-in-law's house to tell her we were going to lose the baby, then Tim and I went to the hospital to induce labor. My dad and brother came too.  The entire time I was in labor that shooting was on TV and the whole day didn't even seem real to me, we were riveted to the television. Even the doctor and nurses were watching TV with us. Julie was ready to be born around 11:45 p.m. and then they said on TV it was Hitler's birthday too.  I thought I don't want this to happen on this day I need to hold her in a little longer, well you know how that goes, it doesn't work that way.

Then when she was born breathing and not dying I have NEVER in my life felt such joy and elation. It got pretty quiet in there for a second; I don't think they quite knew what to think. I was so excited. I think for normal people it was like just finding out you are pregnant. I thought, "We are going to have a baby!"  Tim was praying his little heart out and my dad and brother were just floored. Then they all got busy and got her over to the hospital and well you know the rest.

Sorry to be so long, it’s just been on my mind. Robby, who we lost in 1994 was born right before the Oklahoma bombing. I was on maternity leave depressed out of my mind and that happened. So I think for the rest of my life I will be a little pensive this time of year.

In the written report, the doctor wrote less then 1% chance of survival. I was 31 weeks when we got that report.  In his defense, we only had one ultrasound with Julie. Our specific reason for not doing more testing was actually some of the people we have dealt with over the years, the doctors and ultrasounders. I could write a book about some of the stupid and horrible things that have been said and done to us through this journey.  I also had an understanding with my OB that if she was breathing, we would try to save her. But then I didn't want to go through what we had been through with our first. His lungs kept collapsing and he was absolutely battered from everything that had been done to him. I still have horrible memories of that.  We didn't have funeral arrangements made but we went to this little specialty shop to get her a burial outfit. It was really cute with Noah’s Ark on it. Some of those things I want to keep for her when she is older.” 

“When Jake was born with his multiple problems, we were told that he didn't have much chance of survival.  When they discovered the ARPKD (the next day), we were basically told to pull the plug on his respirator and let him die.  Fortunately we talked with a nephrologist the next day and although he too was not optimistic, he encouraged us to at least give Jake a chance.  He told us of the possible complications associated with this disease, but assured us that each case is different.  My younger brother has a teacher who told us that her daughter had a baby (about 2 years ago), who was born at the same hospital as Jake.  When the doctors discovered that she had numerous cysts on her kidneys, they suggested that the parents "pull the plug". They did, and she died.  It is so sad that these doctors are so quick to pull the plug on these kids, and not even give them a chance.  Hopefully, they will become more informed and educated on this disease so that they can help these kids.” 

“…in asking them (doctors) how many of these cases they had ever seen they said only one and the parents had chosen to abort...  However we did have one doctor say to us the chances of this baby surviving was as good as you winning the lottery!  We did not have a whole lot of hope for many weeks but felt matters were best left in God's hands.  I have to admit, my husband and I were very much under the impression that the death rate of babies born with this was something like 98%…”

“We also expected to lose our son, Jimmy when he was born.  We had a neonatal team with us at delivery, though.  Earlier a neonatologist told us "you know the prognosis is not good" and "we just don't know if he'll take a breath".   We also knew the odds and had read the stories…. Since we had a stillbirth one year earlier we knew of a funeral home to work with.  I still carry the piece of paper with the name and address of the funeral home with me.  I guess I'm a little superstitious.  I want it to fall to pieces, unused, in my wallet.”