Well, a little about my son, Zachariah (Zach). We were told at our 20 week US that he had moderate to severe dilation of the kidney, at that point they didn't really know why. I lived in Colorado and it was right before the Christmas holiday and I was leaving the next day to Alaska (I am a teacher, so that is when I had a break to go home and visit family). I couldn't get in to see a specialist until after we returned Dec. 31. I got in on Jan. 2 and the fetal specialist diagnosed it as being more severe and was in shock at all the fluid "in his stomach". He immediately sent me (that day) to a heart specialist because he thought there might be something with his heart as well. There was no problem there. In the meantime, I had been scheduled w/ Dr. Jones (the fetal specialist) for closer to the end of Jan. He said he would just continue to monitor Zach and I through the rest of the pregnancy and see what could be done after birth. It was a blockage, he knew, but didn't realize the severity of the blockage (at that time 22 weeks).

Of course I was on pins and needles every minute of the day! I just felt like things were not right and I couldn't get it out of my system so I requested to come in earlier. I went back in on Jan. 18th. Dr. Jones couldn't believe the decline that Zach had gone into. The dilation was EXTREMELY severe! All of his amniotic fluid was gone and it appeared to be all in his stomach. At that appointment, Dr. Jones told me that "this baby was not going to survive." My heart nearly died at that moment! My husband wasn't with me, I was all alone. I went home that night and explained everything to my husband, it was a Thursday night. Dr. Jones mentioned some things about talking w/ his head specialist and doing some tests, but he was sure that Zach would not survive. He told me to call him the next day.

I did! He told me about possible in-utero surgeries that were "experimental" in other states. He wanted me back in to do a test on Zach's urine. They drew a urine sample from his bladder. Basically, how that test (and then a second test) went would determine his kidney function and if he was a candidate for anything in-utero. Result one came back as bad...no kidney function and test two, worse...and still no kidney function. He was NOT going to survive. At this point it has been at least a week and a half w/ no amniotic fluid (probably more, as it was low when I had seen him on Jan. 2nd).

This was around Jan. 28th, 2001. No fluid for at least 2 weeks, no kidney function, etc. We were at the hospital w/ Dr. Jones and his head specialist and were told that from all the literature and all that they knew, this baby had NO CHANCE OF SURVIVAL. If he didn't die in me, he would of kidney failure upon birth. Then they proceeded to let me know that he had no fluid, he would soon suffocate -- his lungs would never develop, blood flow would be cut off, etc. They wanted me to go and deliver him then and there. We had had fore-warning that they thought we should do this. My husband and I were there in the hospital and prepared to let them know that that wasn't option for us, because, at 24 (ish) weeks he had no chance of living at that time if he were delivered. We told the doctors that if it were God's will for Zach to not live, then it would be in His time, not ours.

They tried to convince us, over and over telling us the same thing. Again the said that "besides he has no function with either kidney, his lungs won't develop because he has no fluid." Finally I said, "THEN PUT FLUID IN!" They thought I was CRAZY! I said, "put the fluid in so that he has fluid and his lungs will have a chance to develop and we will pray for a miracle with his kidneys." They responded, "Well, we have never done anything like that before." I said, "well, do it now." So the conversation went on and they proceeded to tell me that he has a complete blockage and he will not be able to pee the fluid out, it will continue to reflux to the kidneys and he'll run out of fluid again. This was a Thursday (I believe) and he said if you can make it a week and still have some fluid left, then we will continue to put fluid in.

We made it, not much in, but enough that they would continue with my wishes. Basically, it was a liter of saline solution (an IV bag) and they inserted it like they do an amnio, but in reverse (instead of taking fluid out, they put it in). The very first night was HELL!! It hurt and it was HELL. There was not one pocket of fluid anywhere to be able to add to. My uterus was completely surrounding Zach. It is a miracle there that he didn't cut off supply from the umbilical cord. Finally we (they) were able to get a flow. They compared the process to trying to blow up a basketball (into its little hole) with your mouth. Impossible! It took at least an hour to get that pocket started and then longer to flow in.

I didn't give up, they didn't give up, and Zach didn't give up. In this tiny room, there were 3 nurses, 2 doctors, my husband and I. Everyone was working to get this fluid in me. Amazing!

Well, I had the fluid put in 10 times. Each one quite painful and very exhausting Every time that I went in I had to be reminded by Dr. Jones that, "this baby is not going to survive." I had the fluid put in 1-2 times a week, depending on how low the sac of fluid was ... we couldn't let it run out again. Finally, at 34 weeks, my uterus couldn't handle it anymore and I had a slow leak and it was time to deliver.

I was excited. The nurses whom I'd come quite close to, were worried for me, for they knew the "outcome."

We had to go c-section, they were afraid his bloated belly wouldn't make it out and they also didn't want to cause any more trauma to him at birth.

I prayed for my miracle, but also asked God to just give me some time with him alive, if He had to take him. I was prepared for the worst, but praying for my miracle.

Zach was born March 27, 2001, six weeks to the day of his due date. Blue, not crying. They did some things with him, then brought him to me to say hello and kiss him. His daddy was with him the whole time and praying like crazy. They whisked him to the NICU. I was finished being taken care of. Daddy got to go the NICU. I was taken to my room (on the 7th floor... Zach was on the 3rd ... another long story). I was told he was alive but I couldn't go see him until I was able to walk (with the c-section I was drugged up and couldn't feel/move my lower body).

Zach was born at 6:13 pm and some time in the 10:00 hour I was able to go. I just wanted to talk to him, see him and take as many pictures as I could. I really didn't get much time. Being that the NICU was such a fragile place, I was a threat in there, since I was so sick (throwing up) due to the morphine from my c-section. IT WAS HELL, but I had to leave. My husband was with him as much as he could be.

The next morning, my mother arrived from an all night flight from Alaska. Again I had prayed that she would have a chance to see him alive. My doctors had come in that morning to tell me how he was doing and that he was critical but doing okay. They didn't know how long he would continue.

After days and tests and tests and tests and tests, they started to realize that he had more function then they ever imagined. Our miracle was beginning to shine! He was by no means out of the dark, but there was hope.

His neonatal specialist doctor pulled me aside one day and said, this is one that should be written in the books - that the mother should never give up (well, something like that). These doctors (fetal, neonatal, urologist ...etc) had met on my case every Friday for 8 weeks to "discuss and be prepared" with the plan should this baby come out alive. This doctor said they were all 100% sure "this baby wouldn't survive."

Zach was in the NICU for four weeks. He came home with us on April 24! During his stay in the NICU we were in the elevator with our doctor's head doctor, Dr. Perico, the doctor that said "in all the literature I have read...this baby won't live - he just has too severe of dilation.” My husband said to him (in the elevator) "We have literature that miracles do happen."

Zach's case is now in medical journals. They did much write-up on him. There are things that can be done.

He had the surgery that removed the blockage that caused all of his problems (Hydronepherosis) when he was 10 days old. At 14 days he had a surgery on his colon. After birth it was realized he also has Hirshprungs disease (no nerve endings at the base so he couldn't push poop through). They removed 1/2 of his colon and pulled it through to the rectum and reattached it. He has GI problems to deal w/ now too, but we get through it. June 18, 2001 he had his 3rd surgery, it was to remove his right kidney, as it had no function and was completely cystic and didn't need to be in there. Two days before Thanksgiving that same year, he had his 4th surgery. He also had a condition called Tethered Cord, they had to remove a "fatty deposit", connected to the base of his spinal cord.

He is now nearly 4 and a HAPPY, BEAUTIFUL, LOVING little boy. Our MIRACLE. He is on a lot of medication to help his kidney do what it really can't do.

By the way, yes, they thought these issues had something to do with Down’s Syndrome. Zach's Nuchal fold was a size associated with D/S. I had an amnio at the Jan. 2 ultrasound and it showed that wasn't the case, but we were prepared to love him any way he came.

Everyone, please know that miracles exist and that there is hope.