Friday, June 15, 2012

Owen's story

Pregnancy...one of the most joyous, yet scariest times of a person's life. There is so much that is unexpected, there are no guarantees, and there is A LOT that can go wrong. The last thing on a person's mind when they get that positive pregnancy test is whether their baby will have a disorder, a disease, or God forbid, not survive at all. 

I found out I was pregnant with Owen when our first baby was barely 2 months old. I was shocked, my husband was shocked...well, pretty much everyone was shocked. The only person who gave us any sort of other reaction besides pure shock was my OB/GYN, and that was more of a "What in the heck are you thinking" reaction! 

The beginning of the pregnancy progressed as normal. I felt great! By the time our 20 week appointment came around we had decided not to find out the sex of our baby, feeling strongly that it was a girl and she was healthy. So, Brandon and I sat happily and watched our wonderful baby that God was knitting in my womb. The ultrasound tech looked at the brain, the heart, the lungs...and then she paused. She saw something that wasn't quite right on the screen and got a little flustered and said that she needed to get the doctor. We had NO idea what was going on, so I began to press her for information. She said that the issue is sex-specific and we need to know if there is a family history of a particular disorder. That's when she told us that we were having a baby boy and he wasn't quite healthy. 

It turns out that what the tech saw was a "keyhole deformity" that indicated Posterior Urethral Valve Syndrome (PUVS for short). This was a congenital defect that affects the urinary/renal areas of the body; the valves can obstruct or reverse the flow of urine and cause numerous other health problems. At that point, my doctor chose to see me for another ultrasound in four weeks to see how the condition was progressing. So at 24 weeks, we went back in to the doctor and the condition had worsened. He immediately referred me to a perinatologist where I was seen every few weeks for stress tests and ultrasounds. 

The perinatologist was a completely different animal. They were very careful with what they told me and often didn't disclose much as far as Owen's condition was concerned; they chose to have me focus on seeing the baby, watching him breathe, and looking at his *very* large feet (which he still has, by the way) and wonderful profile. A handsome baby. But regardless, I couldn't help but wonder "What is happening to my baby?". At one of my appointments I heard the doctor call in a colleague and I remember them discussing keyhole deformities and other medical speak that I didn't understand. All of my appointments ended with a meeting with the perinatologist and at this particular meeting, he recommended I get in touch with a pediatric urologist because the diagnosis of PUVS is incorrect. We chose a pediatric urologist and he began working with her right away. I was told I would receive a call...

That call never came :( Before my appointment at 32 weeks I decided to give my pediatric urologists' office a call. I calmly asked the nurse what was happening with my son, and she dropped a bomb. "Um...Mrs. Lickfold...the doctor has diagnosed your son with PKD. Autosomal Recessive Polycystic Kidney Disease. I'm sorry". I pressed for more information, but she said I had to speak with my perinatologist and the pediatric urologist about that. I was heartbroken. 

My baby has a disease? MY BABY HAS A DISEASE!

At that point, I went in to my appointment and watched him as his little body move around my belly, watching him practice his breathing. The doctor came in and you could clearly see the cysts on his kidneys. We knew that one kidney was larger than the other, as this had been explained to me in previous sessions, but now I could actually SEE the tiny little cysts all over his kidneys. My baby wasn't okay, and I had no idea how to handle that. It was at this appointment that they also noticed a significant difference in the amniotic fluid level and was officially diagnosed with oligohydramnios -low amniotic fluid. The doctor explained what was happening, that the outcome for PCKD was highly variable-anything from stillborn due to complications associated with all of the side effects like low amniotic fluid, to the "best case scenario" which would be needing a kidney transplant at around age 3 IF HE WAS LUCKY. The doctor wanted to see me in two weeks. 


Over the next few weeks I did all the research I could about polycystic kidney disease and I hated what I heard. My sister-in-law put in several prayer requests at her church, had homegroups praying for me, and had many, many people praying for me and my baby daily. At my 34 week appointment at the perinatologist, it was just a normal NST, measuring amniotic fluid, and quick scan of the kidneys to see how the disease was progressing. The ultrasound tech called out to the peri with a serious sense of urgency in her voice, and I began to panic. The peri came in the room, and in amazement said "I need a second set of eyes, here". He went and got a specialist that just happened to be in the office (don't you love that?) and they both stared at the large u/s screen until my peri sat down and started doing the ultrasound himself. Then, one of the doctors, I cannot remember which, exclaimed "These cysts are not communicating. They're isolated!" That meant nothing to me, so once again, I began to panic. The specialist that was visiting asked if my baby had been given a clear diagnosis of PKD and the peri said that I had, and he had previous ultrasounds to prove it. The u/s tech continued with the ultrasound while the two men disappeared, and I continued to look on the screen for any obvious sign of something else being wrong. 

When the appointment was over, my husband and I went in to the perinatologist's office where he and the specialist were waiting. We sat down, and the peri pulled out my file and started showing us a bunch of pictures of our baby's kidneys. First of all, the one kidney was still rather enlarged but amniotic fluid, although low, had stabilized. Then he dropped the bomb:

Mr. and Mrs. Lickfold, I have never seen something like this in my years as a perinatologist. Initially your son had been given the diagnosis of PUVS, which we found to be an incorrect diagnosis. Then we discovered that the kidney was rather enlarged and had some cysts on it. The pediatric urologist reviewed all of our material and gave the diagnosis of Autosomal Recessive PKD. However at this ultrasound, by some miracle, that diagnosis seems no longer correct. We are stumped; we have no explanation because this is not a condition that just "goes away". We are downgrading his diagnosis from PKD to Multicystic Dysplastic Kidney Disease because the cysts were *originally* communicating, which we witnessed in several ultrasounds, however they are no longer communicating and are clearly isolated. We have not seen anything like this, this was a clear case of PKD initially and now...well, now it's just not.

Well then...that's interesting. He went on to explain that we'll still need support staff in the delivery room *just in case*, but at that moment something came over me and I felt like everything was going to be okay. I had already made peace with the diagnosis over the last two weeks, but I was overjoyed that his condition had MIRACULOUSLY changed. 

The only thing I could think of was that praying had worked; that the Lord had not necessarily healed, but delivered Owen from this horrible, scary disease. God listened.

I was able to enjoy the rest of my pregnancy, but I was still cautiously optimistic. The pediatric urologist, my perinatologist and his partner, and several other nurses and support staff attended my c-section to ensure that everything went as planned. Owen was born screaming before he was even all the way out! His lungs were good, my fluid was low, but his lungs were good!

Shortly after his birth we were visited by the peri and the pediatric urologist. They explained to us what would be happening over the next several hours. First, he would receive an ultrasound of his kidneys and bladder to see how things went. Then, he would receive a VCUG, a voiding cysto-urethrogram which required a catheter to be inserted. First they did the ultrasound while Owen lay in his daddy's lap. They noted that the kidney was still enlarged but there were fewer cysts. The next day they did the VCUG. I was wheeled down to the room while holding Owen and all I could do was snuggle my precious miracle. I couldn't believe he was here! When we got to the room, I stood there and watched as he screamed while they put the catheter in. I felt faint so I sat down. Unfortunately, the first attempt didn't take, so I had to leave the room while they attempted it again. I was wheeled back to my room while my husband (bless his wonderful heart) stayed with our son while they did the VCUG. 

Results from the VCUG were negative-there were no issues of fluids backing up in to the kidneys, and the bladder drained just fine. Owen was put on antibiotics *just in case* to stave off any possible bladder infections/UTI's/kidney infections since they had NO idea what was going on with his condition. We also saw the pediatric urologist once every few months. 

When Owen was almost one, we moved to a new area. We felt that he was healthy but there were still questions about his condition that were unanswered. We had to take him in to have some testing done where they give him an IV with some dye and see how his body eliminates it from his system. They were in effect testing his kidney function. We were able to be in the room while they did the testing, and he slept peacefully (thanks to hospital blankets and blanket warmers) through the whole thing. A few weeks later we met with the doctor to discuss the results. 

The results were shocking. His kidneys were functioning at 49 and 51 percent...which doesn't get much better than that! There was no "backflow", there were no more cysts, and his enlarged kidney had gone down to completely normal size. 

The doctor was baffled. She had told us that this was a sheer miracle, as his diagnosis of PKD is not something that just "goes away". She said she had never seen anything like this before, going from a certain, clear-cut case of PKD to being absolutely NOTHING. She said the only explanation she could arrive to was that "maybe there was a kinked ureter or something, causing things to build up". 

Owen is my reason for believing in God. I think that the experience we went through with him is nothing short of a miracle. Many people have tried to explain away his condition and my belief that the power of prayer healed him, but nothing can shake that belief. I will always believe in the power of prayer and I *never* take prayer requests lightly. For us, Owen is our miracle baby...nothing short of a miracle...

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