After a few weeks of keeping things relatively private, we have decided to share what we are up against with our baby girl for a few reasons.
First, Joey and I believe in the power of prayer and we are hoping that the more people who know, the more people will pray for us and our baby. Secondly, I have received so many calls, texts, and messages over the last 24 hours that I thought explaining it once would be easier than trying to get back to everyone. From the bottom of our hearts, thank you for caring. It means more than you know. Thirdly, being fake really bothers me. I don’t want to be fake and when people ask me “How I’m feeling” or “How the baby is doing,” I don’t want to say “good” because neither one of us are really “good” right now. (At the same time, I don’t want to have to explain this a thousand times). Finally, after three different appointments yesterday, all of this information is kind of swarming in my head, and I think that writing it all out will help me to sort things out myself. It’s 4:27am and I can’t sleep anyway, so I’m hoping this will be therapeutic. So here goes…
Early in May, Joey and I had our routine ultrasound where we learned the exciting news that we would be having a little girl. The next day, I received a call from my OB that the tech had found some things that were concerning including a dilated stomach and bladder. They set me up for a follow-up ultrasound at West Penn in Pittsburgh where they have better equipment and could get a better idea of what might be going on. The OB nurse told me it could be nothing, but they just wanted to be sure. Of course, a person immediately becomes anxious when you hear something could be “wrong” with your child, but after talking to many friends and colleagues who also had to do follow up scans that were bogus, I felt confident it was probably just an error. We went to our appointment yesterday cautious, yet both feeling that it was probably nothing. We just wanted to get it over with so we could get on with our lives and not have it hanging over us.
The appointment started with a consult with a genetic counselor who took all of our info and said it sounded like we would have a perfectly healthy baby. She explained that even with the measurements the tech from Kittanning sent, we still fell under the “normal” category for the baby’s stomach. The bladder did seem a little enlarged, but she thought that could have just meant that the baby recently took a big drink and needed to pee. At that point, my nerves were calmed and we entered the ultrasound room laughing and excited to get another picture of our baby.
As soon as the tech brought up the picture, my heart sank. I knew right away that something wasn’t right. There was a very large, dark circle taking up a good part of the baby’s midsection, and I knew that wasn’t there in Jonah’s ultrasounds. I asked her what that dark circle was and she very quietly and calmly replied that it was the baby’s bladder. We all remained very quiet for the rest of the scan. She did her best to be positive, showing us two arms, and two legs, fingers and toes and letting us know that the baby’s heartbeat was great. As soon as she walked out I looked at Joey with tears and asked him to start praying because I knew something was very wrong. He didn’t have the same feeling and wondered how I would “know” that already, and I told him I just did. Mother’s instinct I suppose.
The tech told us to stay in the room and about 10 minutes later, which felt like an eternity, the doctor, who I’d never met before, came in. She said she was sorry to have to tell us, but she had some very concerning news. She went on to explain that our baby’s bladder is severely enlarged at this point. She actually described it as “shocking.” There is a blockage and they believe it is a membrane where the opening of the urethra is located. She, and my doctor (who we met with later in the day), believe that the membrane just didn’t fully open and that it is causing urine to back up in the baby’s bladder. This is a condition that is very rare. When it does occur, it is almost always found in boys, and is extremely rare to see in little girls. So what does that mean for the baby?
- The blockage could open up and resolve itself in time, and this is what we’re asking you to pray for. We have another ultrasound at West Penn in 3 weeks, and it is possible that we may go back and the pressure from the backup has caused the blockage to open. It could be fully resolved with no further complications if that were to happen.
- If the bladder continues to fill, it would eventually push the urine up into that baby’s other organs. It could cause kidney damage or damage to other organs. If this happens, I will need fetal surgery which will take place at Magee Hospital. (Due to the ongoing saga between UPMC and Highmark, at this time, this is a surgery that is only partially covered by my Highmark insurance, so that would be another prayer request). They will go into the baby, inside of my uterus, and insert a catheter to let the baby empty the urine. This is a very risky procedure, and the biggest risk is infection which could lead to an early emergency delivery or other complications.
- The doctors made it clear that this could be fatal for our baby. I am now considered a high risk pregnancy, and my care will be shared between West Penn, ACMH, and possibly Magee if I need to have the surgery.
The Good News
I point blank asked Dr. Narcisse (who is quite possibly the most wonderful OB ever) if she thinks the baby will be okay. She said “yes” and explained why she is hopeful at this point. There IS good news.
- As of now, the fluids have not entered any other organs. All other organs appear to be functioning normally and are the appropriate size. At this point, it appears there has been no long term damage done already.
- What the doctors found most encouraging is that my amniotic fluid levels are normal. This perplexed them to some degree because (which I didn’t previously know), a baby swallows amniotic fluid, then urinates it out, then repeats that process throughout the 2nd and 3rd trimester. With the bladder being so full, the doctor’s expected the amniotic fluid to be low which can be very dangerous for the baby for many reasons. This is not the case with our baby which indicates there is probably some sort of pin hole or small opening where urine is exiting. It is probably just a trickle however, rather than a smooth flow as it should be.
I asked all of my doctors what I should do at this point to help our baby girl. I wondered if there was a medication I could take, a food I could eat, or an exercise I should (or shouldn’t do) to make this happen for her and they all gave me the same answer. Nothing. There is nothing we could have done to cause this, nothing we can do to fix it, and nothing I can do to make it better or worse. They said that it is going to be a very long four months, with many appointments, and many decisions. They all told me that the best thing I can do is go home and cry, and then make a point to get up and just keep living life as I was, spending time with friends and family, playing with Jonah, exercising, and anything I can do to not lose my mind with worry because for awhile at least, it is just a waiting game. We would be so grateful if you would pray for our baby. Right now, she has a strong heartbeat. She has had a name since our 13 week ultrasound when we learned she was a girl (though we are keeping that private for now). She is very active, kicking me constantly. She just needs a little help to resolve this problem, and we know that God is the only one who can help her do so at this point. With that said, we know that God may choose not to heal our baby, and that He is still good, and he still has a plan for our baby and our family. I pray we hold on to that truth, no matter what the outcome.
For Hope and Health,
<3 Laura, Joey and Jonah