The website for Shands Hospital in Gainesville, FL has provided the most hope over the past few days. Now, it is time to get some more information. I go to the main page for the CDH program and decide to write for more information. I write:

My husband and I just found out that our unborn daughter has been diagnosed with Congenital Diaphragmatic Hernia. I am 21 weeks along in my pregnancy. Thank God for your website – – it is the only resource I can find nationally that is offering our baby a true chance at life. Locally, the doctors have taken the stance that we should end the pregnancy, which is simply not an option for me and my husband. We want to give our daughter her best chance at life. Reading about Dr. Kays gives us the impression that he has a true passion for this abnormality and that he is there to “fight” with us, leveraging his talents to achieve the best outcome possible. I would love for someone to contact me so I can find out how your program for CDH works and what “next steps” you recommend.

I have been scouring the internet for hours.  Mostly, some of the big name hospitals show up with links to their info pages on CDH.  But when you begin to read, there is not much hope.  Everything out there seems pretty bleak and discouraging.

University of San Francisco is into experimental treatments with in-utero surgery: Risky and not proven to have higher survival rates.  Other hospitals that seem to have programs: Cincinnati, Philadelphia, Boston, and Columbia.  Again, nothing with any true hope about a higher survival rate or quality of life.  Everything is pretty much telling us that it is high risk, severe, and that at best, a 50/50 chance of survival.

Buried on the 2nd or 3rd page of organic search results, I finally come across something different.  It is about the program at Shands Children’s Hospital in Gainesville, FL.  Even their website for the program mentions, “Nationally, 50 percent or more of the affected babies die in the first days or weeks of life. There is considerably more hope for these unborn babies at Shands Children’s Hospital at the University of Florida.  Since 1992, the CDH survival rate at Shands Children’s Hospital is unprecedented. According to the Annals of Surgery (September 1999), the survival rate was 89% (47 of 53) of treated patients and 92% (23 of 25) of consecutive patients with isolated CDH who were both born and treated at Shands Children’s Hospital.”  This was my first breath of fresh air.  Then, there was an audio file…I listened.  It talked about a child born with a severe diaphragmatic hernia and how he had survived, thanks to the talent of Dr. David Kays, pediatric surgeon. 

From there, I heard on the audio file that the parents had set up a support group called Kay’s Kids, named after the doctor that had saved their lives.  I went to the site.  Then, I began reading story after story about the amazing journey of these parents and how they cannot imagine taking their child to any other place for birth and surgery.  Most of these stories were traumatic with details, but many ended with these parents having healthy children in their lives.  I read a few more stories and tears began to well up in my eyes.  This was the breath of fresh air that I needed – – there was hope.  Although we have no guarantees, it seems like there is a doctor out there who wants to try and help you save your child and is not promoting termination.  Also, that we are not alone — there are plenty of parents that have gone through something similar.

I ran to the other room, where Josh was watching TV, and started to share with him what I had discovered.  He started crying too.  At this point, we have no idea what God has planned for this journey.  But we know that His plan is the best.  At least there was some hope to be found…thank God for the Internet!

With the assistance of her Dad, Megan emailed me the cutest letter today. Apparently, she wrote it at school during the day and brought it home. I received it upon returning from the specialists. Since all the news is so fresh, I have not had a chance to share the news with this part of my family. This was a sweet ending to a rough day for me…

…Dr. Vargas had referred us to a group out of St.Luke’s Presbyterian Hospital in Denver, CO. We had an appointment at 2pm and they encouraged you to be early to register at the hospital. We went and arrived early, filled out all the paperwork and showed up for the ultrasound promptly at 2pm. It was a strange waiting area in the hospital. There was a narrow area with 6 chairs and two end tables with magazines. There was no front desk or anyone to greet. We took a seat as instructed.

Initially, it sounded like there was an ultrasound in progress that they were finishing up. Then, we saw a pregnant lady leave. Okay, well…maybe they are just running a bit behind. It was 2:20pm. Still no greeting from anyone to acknowledge that we were out in the waiting room. Then, a man walked in the entrance and went straight back to the room. He began talking with the ultrasound technician. They were talking about the ultrasound equipment and other surface topics…just seemed like chit-chat. Meanwhile, the clock was ticking away. Didn’t they realize that we were waiting and that it was way past our appointment time? Also, that this was a tough situation…and that they were not making it any easier?

Finally at 2:45pm, the ultrasound technician came out to get us for the ultrasound. The man that was talking to her stayed in the room – – he did not ask if it was okay. He just assumed a seat. At this point, I was very upset. I was mad that we had been waiting and that he had been chit-chatting with her. Also, that he did not ask if he could stay in the room. I gave “the look” to Josh, so he could address the situation.

Sure enough, Josh addressed it and the sales rep for the ultrasound equipment left the room. Then, Josh expressed frustration to the ultrasound technician for the tardiness and the lack of communication with us while in the waiting room.

The technician went through and took all the photos and measurements. Then, she called Dr. Adelburg into the room. This was the specialist who would confirm the diagnosis. Yes, she did confirm the diagnosis and then went on to describe a bleak and grim view of the future for our baby. She emphasized that we needed an amniocentesis and that we only had a few weeks to make a final decision. She made the assumption that we were considering termination and seemed to focus her efforts on painting a sad circumstance where termination might seem like a favorable possibility.

I was in such a fog. Next thing I know, there is this LONG needle poking through my belly and uterus, drawing amniotic fluid. It was the longest 30 seconds ever. I squeezed Josh’s hand hard…it was very uncomfortable and made me cramp up. They had the ultrasound machine on the entire time, so they could make sure that it did not interfere with the baby. When it was finished, they scanned over to the baby. She looked completely at peace…she was laying on her side in the fetal position with her hands folded under her head. She looked like she was taking a nap…not even bothered by the entire procedure.

After seeing our baby girl via ultrasound and listening to the grim news, we left feeling sad and deflated. That was when I started to cry and cry hard. The reality of the situation was hitting me. Plus, the entire experience there was not positive. All they did was try to push termination and give us a negative prognosis with zero chance for any hope.

We came home and made some phone calls to family. It was all such a blur. We were so happy and elated just 3 days ago, when we found out we were having a girl. Now, it just felt like the sky was caving in on us. Such a high and now such a low. God, what is your plan? We know that you allow us to go through situations to stretch us and make us grow. But, what was this about?

I was in downtown Denver working.  It was a Wednesday afternoon.  The sales team from Rent.com was in town to meet the new Director of Sales.  We were at the Hotel Monaco.  On a break, I checked voicemail.  It was Dr.Vargas – – she wanted to talk about the ultrasound.  Immediately, my heart sank.  I knew that the news was not good.  I tried calling her back – – she was occupied at a delivery.  We played phone tag.  Finally, later in the day, she reached me.  I was still surrounded by colleagues but excused myself to a corner of the hotel lobby.

She gave me the news that our unborn baby girl had a high-risk birth defect called Congenital Diaphragmatic Hernia (CDH).  She wanted us to go see a specialist, so she took the liberty of making an appointment for the very next day at 2pm.  It was so hard to take in the news.  I wasn’t sure how to react.  I just knew it was very serious.  I tried calling Josh but he did not pick up his cell phone.  That was probably better…it would be hard to tell him at work over the phone.

Finally that evening, I shared everything with Josh.  He had so many questions.  I kept the cell phone number of Dr. Vargas handy and she offered for us to call if we had any other questions.  I prompted Josh to call and talk to her so he could hear the news himself and ask her whatever questions that he wanted. 

That night was surreal.  It made me sad…and upset.  Tomorrow would be a rough day…I just knew it.

Today is the day….so excited. Josh & I both took the day off, so we could relax and enjoy the doctor visit.

Dr. Vargas was out of town, so we met with the pediatric nurse. She let me know that I had gained 5 pounds so far, which is a bit under for most women at 20 weeks. (I took that as a good sign!). Afterwards, we went to have the ultrasound. The technician gave us the news…we were having a little girl.

Josh was so excited – – he admitted from the beginning that he really wanted a girl. Although he would have been happy either way, he really wanted a girl for our first baby. At this appointment, I found myself starting to get excited. This was the first time for me. Up to this point, I had been very hesitant to let myself get excited. I was always worried that something might be wrong.

We left elated and couldn’t wait to call our family and friends to share the good news!