Baby Sobania

First post: Mar 29, 2017 Latest post: Jun 22, 2017
On March 7th, Corey and I were anxiously waiting to get a nice clear view of our growing baby at our 20 week ultrasound scan. Instead we were hit with some devastating news. The doctors found that there was very little amniotic fluid around baby, the left kidney was enlarged, and they couldn't locate the right kidney. We were told that the prognosis was not good for our little one and if a miracle didn't happen within 2 weeks that our baby would most likely die either in utero or after birth. We were given the option of terminating the pregnancy or waiting to see what fate was in store for our little one. Termination was not an option for us, so we scheduled another appointment the following week and also agreed to do some genetic testing.

At this appointment we receive a small glimpse of hope. They found a bladder full of urine and they found blood flow to the left kidney. All they could find was one small pocket of fluid behind the baby at this time, but it was something. Our perinatologist sounded optimistic and assured us that she wasn't ready to give up hope just yet. So she referred us to another specialist at The Fetal Care Center at Abbott Northwestern to see what his input was on our situation. Our appointment was scheduled for March 28th and I'd be right on my 23 week gestation mark.

Corey, my mother, my mother-in-law, and I all took the trip to the cities for this appointment. We had our hopes up for the smallest bit of good news. We were hit again with heartache. Now there is no amniotic fluid to be found, they found both kidneys but there appears to be very minimal function (if any) to them, the bladder walls are starting to thicken, the heart takes up the majority of the chest cavity, which indicates that the lungs are not developing properly. Things were not good at all. The specialist came in to explain all of this to us. He gave us 4 options to choose from 1) again was termination (No no no right away was my answer, he said he has to offer it) 2) is to continue the pregnancy as is and just wait to see what happens (they are giving the baby 0% chance of survival with this) 3) try amnioinfusions, which would be them sticking a long needle through my stomach into my uterus up to a few times a week to push fluid into it. This procedure puts me and baby at the most risk due to the repeated insertion of the needle. Risk of infection is higher, as well as ruptering ( I also have a low lying placenta which puts me more at risk for bleeding out if rupture does take place), and hitting the baby. I had a amniocentesis done at my 20 week and I can't say it was fun, and with those risks I might be willing to try one amnioinfusion but not so sure about multiple ones per week. SCARY! and 4) a procedure that has only been done in Ohio and Colorado. Since 2010 there have only been 8 people who have had it done. The doctor we met with at the time wanted to get more information about this procedure from a doctor in Cincinnati before fully giving us this option. So we left this appointment pretty much feeling hopeless again and going over the last 3 options over and over again.

The next day, the doctor that we met with calls me personally to tell me that I am a prime candidate for this procedure and they have the resources to do it in Minneapolis. I told him that Corey and I would have to discuss things before we made a decision. A couple hours later he calls me again to ask if I'd be willing to speak with the head surgeon about this procedure and get all of the facts, statistics, and risks to help us better make our decision. We schedule to talk on the phone with the surgeon an hour later. (Honestly at this point we were thinking that the risk of this procedure was way too high and we were leaning more towards just seeing if a miracle would happen or trying one amnioinfusion to see if it helps). 

He calls and informs us that with this procedure they would insert what is called an amnioport into my uterus. This port would stay there until the baby is born and give them access to put fluid into my uterus as the baby needs it, without the risk of sticking needles in over and over again. This would give our baby a 50-60% chance of survival. The risk to me would be possible bleeding and possible infection and he gave that a less than 1% risk. And a less than 1% chance of it having any influence on future pregnancies. This procedure would help our baby's lungs, hopefully to function on their own one day. Of course baby would still need very rigorous care after birth (temporary use of a ventilator and dialysis) but if we can get baby to around its first year of life and eventually on a kidney transplant list, our child has greater than 90% chance of leading a healthy and happy lifestyle. It is getting to that point that will be the challenge. We have decided that with the minimal risk to me and since the chances our baby will survive go from 0% to 50-60% that we should try to do what we can for our baby. There are many, many obstacles that lie ahead for us with this but we have full faith in God that he's leading us in the right direction and holding our hands every step of the way. As of right now, we are awaiting information on what our insurance will cover. If we get cleared that they'll cover it, the procedure will take place as soon as this Friday. 

Thank you everyone who has taken the time to hear our story. We appreciate everyone's thoughts and prayers. It has been an absolute rollercoaster of emotions these last 3 weeks for us and we couldn't have gotten through without the grace of God and your support.

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