Today we made our flight, hotel and car rental arrangements for visiting Florida. 

Thankfully, Southwest had a great deal online.  For both of us, it was only $435 total.  We are scheduled to fly on Thurs, May 31st and drive from Orlando to Gainesville (about a 2 hour drive).  On Friday, June 1st, we meet with the OBGYN and pediatric surgeon as well as tour the hospital.  On Saturday, June 2nd, we are going to spend the day researching housing options.  We return to Denver on Sunday, June 3rd.

I’m excited and anxious to visit and have confirmation that this is where we will deliver our baby girl.

After much prayer and research, we still felt that Florida was our best option.  But I wanted to be open-minded about other options.  The only other choice was the Children’s Hospital of Philadelphia (CHOP).  Up to this point, I had been asking God for clear direction and wisdom in this decision.

I posted a message on their website…waiting to see if I hear anything.

This morning, we went to get a fetal echo performed. The experience with these doctors was once again not favorable – – they had poor bedside manners. However, in the end, we heard the news we wanted. From what they could see, there were no structural abnormalities of the heart noted, based on what they could see. This was a relief.

The next appointment was scheduled for Friday, May 11th. The appointment is downtown with Dr. Hobbins. He will measure her lung volume via 3D ultrasound, to see if his results are consistent with the LHR that Dr. Galan noted.

As mentioned in the last post, I was going to go meet with Dr. Henry Galan. I was trying to be optimistic that this experience would be different. Thankfully, Dr. Galan had much better bedside manners. He was never optimistic about the prognosis, but treated me with more respect, knowing that termination was not an option for us.

During this visit, I learned that she has a left-sided diaphragmatic hernia…also, that her case of CDH is severe. He measured the Lung-to-Head ratio (LHR). My research to this point showed that:

1.4 or greater – mild CDH
1.0 – 1.4 – moderate CDH
< 1.0 – severe CDH Our baby girl’s CDH measured out at .8 LHR. Along with this, he mentioned that the left lobe of her liver was present in her chest cavity, another sign of severity. In his report, he wrote, “The presence of the liver in the chest as well as the LHR of less than 1 places the fetal prognosis in the less favorable category with survival approximately 20% at best.” Tomorrow, the fetal echo is scheduled. Although it was scheduled with the initial group of doctors, I kept the appointment. I was anxious to find out whether or not there was any heart defects. Up to this point, everything else was tracking “normal” for her…it seems that the missing diaphragm is the only obstacle so far. Although this is serious and can be lethal for her, many times babies with CDH carry other abnormalities which make the fight for life even tougher.

I finally decided to give Dr. Vargas a call a few days ago, but she was out of town. She returned from vacation today and we were able to connect. I wanted to share with her my disappointment over the way that the Pediatrix-Obstetrics group had treated my situation. Also, here it had been nearly 3 weeks since we had first heard the news, and I had no idea about what the plan was for my care. Did I go back to Vargas? Did I just continue to see them? No one had called me or filled me in on the details of my care.

She felt bad and stated that she had another doctor with incredible bedside manners that she wanted to refer to me. His name is Dr, Henry Galan. Although going to see him felt somewhat repetitive, I wanted to try. Everyone I had met from the other medical group (Pediatrix-Obstretrics) left much to be desired. Dr. Vargas was able to call the office and schedule me a late appointment for the following day.

Praise God!  We received the news today that our little girl does not have any chromosome or genetic abnormalities!  That is good news…

…since we received the news and I am 21 weeks along.

It was such a whirlwind going to the specialist and having the second ultrasound completed last week, but I will try my best to remember the details. I believe it is on her left hand side which is slightly pushing the heart over to the right. The stomach was the most visible, right next to the heart. Doing my own research, I asked about whether or not the liver was present in the upper cavity and they told me that they were not able to tell based on positioning. So, I am not aware of an LHR being calculated (the lung-to-head ratio helps determine severity). They did note that the kidneys were in the lower area and not affected. Last week, they performed the amniocentesis. I will not have the full results for another week or so. However, they did call me on Monday to let me know that markers 13, 18 and 21 were normal. They told us that the heart seems to be functioning properly, but wanted us to get a fetal echo (scheduled for 4/26/07), to look closer at the heart and make sure that it is functioning properly with no abnormalities. Also, they noted during the exam that there is only a single artery in the umbilical cord (SUA). They stated that sometimes that means nothing, but along with the amniocentesis information, might mean more.

We hope to have more information on the amniocentesis and fetal echo soon.

I was blessed twice today. Last night, I also took the time to read testimonies of different kids from the www.realhopeforcdh.com website that the parents had created. Some of them were amazing. The one about Luke Firestone had caught my attention and I knew that the parents maintained the website. So, I decided to write to the mom, Cathie.

This is what I wrote:

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 love the Lord and trust that He has a plan. We want to give our daughter the 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 appreciate any input you have regarding your “real life” experience at Shands as well as any general advice that you have for us as expecting parents. Also, how is Luke doing? The last update on the site was a while back, so I was just wondering how your family is doing these days.

Again, thanks for the website. It is a ministry to offer expectant parents the information, stories and the true hope that there is a chance. Your testimony on the site touched me in profound ways – – just know that God has used your experience to bless me and my husband.

I look forward to hearing from you,
Tina West

She wrote back too…my heart was warmed. All of this hope was coming at an early stage…but when I needed it the most. God was giving me just what I needed. Cathie wrote back with the following:

Good Morning Tina!

I am so sorry to hear that you too are expecting a baby with CDH…but I am SO GLAD and THANKFUL that you found our site!! YES, there is HOPE for your daughter!

I would love to talk with you over the phone and share anything and everything I can with you about Luke and our amazing experience with Dr. Kays and Shands. I know you are in Colorado and we are in Ohio so I know there is at least a 2 and possibly a 3 hour time difference. Evenings after 8 pm my time are best for me…early afternoons between 1 and 3 my time are good too. Luke has a little brother, Jack, who usually naps in the afternoon. Jack, by the way, was born perfectly healthy (Praise God!) and will turn 2 in a few weeks.

Luke is 6 and is doing GREAT! He will start kindergarten this Fall and is looking forward to playing tee-ball this summer. He is a beautiful, loving little boy…our miracle straight from God’s hand.

Tina, rest assured that you have found THE ABSOLUTE BEST in Dr. David Kays. We were given the same “termination talk” here in OH that you are getting in CO…ignore it and know that there is HUGE HOPE for your precious daughter!!

I am so looking forward to talking with you and your husband.

Know that we will immediately begin to pray for you, your husband and your daughter. God indeed has a plan for your little one!

Sincerely,
Cathie Firestone

This was such a good feeling to be able to hear from a parent who had also experienced this same high-risk situation. Also, Cathie is someone who shares my faith. This was such a comforting feeling. I knew this meant too…that she would pray for us. We needed that so much right now. My heart was just so encouraged by the email exchange.

If you remember, just last night I submitted a message to the main hospital page at Shands. I wrote in with the following message:

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.

At 1:49pm while working, an email message came in. It was Dr. Kays responding to my inquiry! I cannot believe that the actual surgeon was writing me back personally – – that is unheard of these days.

He wrote:

Dear Tina,

Thank you for your note. I was touched by your sentiment, as we often hear that termination is the recommended course.

Yes, I am passionate about these children, and we are very experienced. We treat about 30 kids per year. We have had several families travel from Colorado for delivery and treatment of their children here at UF. I am happy to talk with you about whether this is an option for you or not. (Unfortunately, we cannot accept medicaid from other states, so I hope this isn’t an issue.)

Please let me know a few things about your baby. Boy or girl? Name yet? Left or right? What is in the chest? Did they measure a lung to head ratio (LHR)? Are there any other anomalies noted? Was an amniocentesis done? How old are you? Other kids?

I look forward to hearing from you.

David W. Kays, MD
Associate Professor and Chief
Division of Pediatric Surgery
University of Florida

I was still in shock – – I cannot believe that he wrote me back personally.

This was another sign that this was the right doctor. All the other hospitals had “groups” of doctors…hospitals that had programs that were recognized nationally. Yet, the small town doctor performing miracles was so incredible. I started to feel like this is going to be such a tough experience…having someone care this much already about our baby without even knowing us was a really good sign. If we were going to need to travel a long distance to have our baby, this was the type of doctor that I wanted.

…came back today. Praise God – – there were no abnormalities associated with markers 13, 18 and 21. Those were the most likely to be lethal and they were normal. Some good news…