Update

Brief Update:

Chris and I went to see 2 more specialists at Children’s Hospital on Friday (July 19).  They took another ultrasound with a million pictures with a million different cameras and angles.  The ultrasound specialist told us that the amniotic fluid level was within normal limits, which is good news.  After a few hours, we met with the fetal/pediatric urologist, Dr. Lee, who had spent quite a bit of time reviewing our ultrasound.  He was kind and informed us that our baby does have kidney disease.  The tube coming from the right kidney has an obstruction where it enters the bladder, making urine impossible or extremely difficult to get through, hence the buildup of fluid and inflammation of the right kidney.  The left kidney is in moderate condition.  Although I will be monitored very closely throughout this pregnancy, Dr. Lee was very hopeful that if the kidneys continue doing exactly what they are doing right now, we may be able to make it to 32 weeks.  He did reiterate that our child has a very rare condition and that this is still a really serious situation.  He cannot guarantee that something will not go wrong, but he is cautiously optimistic. 

We meet again with him and a nephrologist (who will discuss with us life with 1 kidney; possibilities of future kidney transplants, etc) in about a week.  Although we still are not certain of the outcome, Chris and I left feeling very hopeful and extremely grateful to have found a doctor that is willing to fight with us.

His feet (wouldn't rotate)

The long story (with medical details and such)

After our devastating news on Tuesday, we went for a second opinion and to see even more specialists at Boston Children’s Hospital on Thursday.  We started our long day with another ultrasound.  It was the third one I had done in a week and normally I’d be elated, but considering the circumstances, I couldn’t even look at the screen when they went to analyze the baby’s kidneys.  Other than the kidneys, this baby is one healthy little guy.  He even gave us a thumbs up.  When the radiologist/ultrasound specialist doctor came in, she said that my amniotic fluid levels were within the normal range, which was really good, as that is what we are really monitoring right now.

Our second appointment was with the fetal/pediatric urologist, Dr. Lee.  He was straight forward with us, but also gave us hope.  He had spent a good portion of time reviewing the hundreds of ultrasound pictures that were taken and came in with a diagram to explain our baby’s situation to us.  So, the baby has renal failure and the right kidney is in serious condition.  This baby has what is called a “duplex kidney.”  Instead of one, he has two ureters coming out of the kidney and emptying into the bladder.  This is a fairly common abnormality.  However, the baby also has a ureterocele, which is a little obstruction at the base of the ureter, where it empties into the bladder.  This obstruction is preventing urine from entering the bladder, so the urine is being retained in the kidney, causing it to enlarge rather than emptying through the bladder and becoming amniotic fluid.  Having the ureterocele with the duplex kidney is what puts us in the 1% of those babies with kidney problems, making this a very rare and serious condition.  The right kidney also has a couple of cysts that have formed in it.  It is unclear whether they are localized to the top third of the kidney or whether they are throughout the kidney. Localizing them would be better because the doctors would be able to correct this much easier in the future.

If all of the problems were on the right side, we would probably be just fine.  However the left kidney is in moderate condition.  It is a little larger than normal and Dr. Lee speculated that it may be experiencing some reflux—every time urine is released from the kidney, a little backflows.  This normally wouldn’t be an issue and again, a lot of babies have it, but because of the condition of the right kidney, this makes everything more complicated.

Dr. Lee was really great and also pointed out some positive things.  First of all, the amniotic fluid level is normal, for now.  This means that whatever the baby is producing is enough for now.  The texture of the baby’s kidneys and bladder are also all right and the bladder isn’t too engorged.  Although we have a lot of serious issues, there are some good things as well.  Dr. Lee said that the development of the kidneys was pre-determined long ago and that the cells were going to continue to divide the way they have been dividing.  He said that if things progress as they have been, we may not even need dialysis or a kidney transplant when the baby is born.

When I brought up my concerns about being able to continue this pregnancy and that terminating wasn’t an option for us, he was completely supportive.  When I asked how long to aim for (to carry this child), he said, “Why not aim for 32 weeks, maybe even 36.”  What a wonderful feeling.  That way, the prematurity of the infant wouldn’t be an issue and we would only have one area to focus on.  He was cautiously optimistic and let us know that while we could hope that things stay about the same, there is no way to predict if things will get worse and that they very possibly could.  Before we left, I asked him very bluntly how long this baby could survive with the fluid levels as they were if his kidneys completely ceased to function right now.  He answered “2 weeks” and that is why my appointment is for 2 weeks. 

Chris and I felt so comfortable with him and so good after meeting with him.  It was such a turn around from Tuesday.  We know that our situation is still very serious, but we were so grateful to leave the office with hope.  I was so grateful that he kept saying, “After the baby is born…” or “when the baby is born…”  It gave me a little confidence that we can make it.  I am also comforted that I know that my baby has enough fluid to survive on until we can check again.  I am sure that I will get more and more anxious as these two weeks come to a close, but I can take it day by day if I have a reasonable confidence that my child will be alive when I wake up the next morning. 

Chris and I go back next Wednesday (7/31) for another ultrasound and urology appointment.  We also meet with the nephrologist for the first time.  He will discuss things like “life with one kidney” or “what to do when your child’s kidney fails at 1 year/12 years/etc.”  I am nervous to meet with him but will be great to be talking about a future child.

Brief Thoughts

 I also know that despite our best efforts to get out, we are in Boston for a reason—this child.  If there is any hospital in the world that can save his life, it is this one.  In the 2013 rank of Children’s Hospitals, Boston ranks #1 in neonatology, urology, and nephrology.  All things that we need, or will need.  Children come to Boston from all around the world and Chris and I are extremely blessed to be 20 minutes away. 

I know that we have more hard times coming and a lot more up and downs.  We appreciate your continued prayers and support in this trying time.

My first specialist appointment (for my own records.  Read on if you are curious, or want to be extremely angered):

After our initial ultrasound last Thursday (7/11) we asked the doctor on Thursday if it was fatal, she said it was “extremely unlikely.”  Okay, so our baby is going to have kidney problems and might need treatment, but we can do all this.  Our baby will make it.  Chris had a one day trip in DC and we agreed that he would go to that and I would go to the specialist appointment by myself.

I dropped Lincoln off at a friend’s and went to handle the hardest day of my life all by myself (7/16).  I walked in and had my ultrasound re-done.  We found out for sure that this baby is a boy.  After the ultrasound, the fetal-maternal doctor came in.  I was lying on the table with my shirt up, ultrasound gel on my stomach, lights dim.  I was in the most vulnerable position I could be in.  And, he didn’t even end up taking a second look. 

Well, he let the news drop.  This baby has renal disease and one kidney has almost completely ceased to function.  The other one is showing signs of failing as well.  I wept silently on the table.  After a few minutes, I wiped the tears from my face and said, “Okay, what do we do?”  He responded, “There is nothing we can do.”  I have never sobbed so hard in my life.  I was going to lose my baby.  He continued, “You have a lot of choices to make.  You still have a little time to decide, but you could terminate now.”  I interrupted him, “No! That is not an option for me.”  To which he responded, “Then you need to start thinking about how much life support you are going to give this baby when he is born.  He is going to need dialysis and a kidney transplant.”  He was throwing red flags all over the place and I was in too much shock to see them. 

He also wants me to get an amniocentesis done.  That is the needle/analysis that you can get early in pregnancy that can detect Down’s syndrome.  I never opted to get it because it doesn’t matter to me whether my child has Down’s or not, it is my child and I am keeping him.   Well, he wants me to get it done now to determine if this is a chromosomal defect or not.  If it is, then the baby will not survive and he will treat the pregnancy difference.  He also wants me to leave Dr. Hardiman’s care and continue seeing him.  He will deliver me at Beth Israel so we can be closer to Children’s Hospital via C-section.   Looking back, I was still in shock, but I have never been so offended in my life.  Why in the world would you treat this pregnancy different if you knew the child would die soon after?  Why should I get that testing done? 

Although he was kind at the time, I do not like that man.  He shares none of my values and kept calling Chris out for not being here with me.

Luckily, I had some semblance of reason and I walked straight up to Dr. Hardiman’s office.  By the grace of God, she was in her office, sitting behind the front desk.  She was actually waiting to get a hold of the doctor I just saw and just came down from a delivery. 

She sat and cried with me for an hour while I processed everything.  She explained that if the kidneys weren’t putting forth urine, the amniotic fluid around the baby would continue to get lower and lower until it affected the development of the lungs.  Without proper lung development, the baby could not survive outside of the womb.  She said that best case scenario, this baby makes it to 28-30 weeks and is able to be delivered.  He needs dialysis and kidney transplant, but his lungs will be developed enough to survive. 

Dr. Hardiman explained things to me in simple terms and helped me struggle with the realization that I might not have a baby at the end of this pregnancy.

After today, Chris and I were left with little hope, just of a miracle that our baby could make it to 28 weeks.