It all started in November when we returned from a business trip to Mexico (visiting Aunt Beth and Uncle Bob in the process). I had been feeling "funny" so before making a doctor appointment I had decided to take a pregnancy test. To our surprise it was positive. We were thrilled, especially since we had been trying for about a year. Everything was going normally until we had our 18 week ultrasound (where we found out we were having a boy). That day we received a call from our doctor saying that they had found a problem with the baby's heart and that we would need to have a follow-up echo to diagnose the problem (if there was one). We were crushed, after all the 18 week ultrasound was supposed to be fun. We had never expected to have a problem turn up.
At about 20 weeks, we went in for the fetal echo, very nervous. The test went well and it was determined that the heart was healthy and functioning fine. We were very relieved, but at the end of the test the cardiologist mentioned that the heart was pushed too far to the left. She couldn't see a cause and told us to have a level 3 ultrasound done to "dot the i's and cross the t's". We left feeling very comfortable and with no idea there could be something more serious going on.
At 22 weeks, we went in for our level 3 echo. It sounds strange, but we were not very nervous since we had felt so comfortable after the echo. The technician found the problem almost right away and mentioned to us that there was a defect in the diaphram. At the time it did not sound like much to worry about. He brought the doctor in and we could tell right away by his somber face that this was something serious. Our baby was diagnosed with congenital diaphragmatic hernia on the right hand side. The doctor began talking about survival percentages and offered up termination as an option. We had felt like a train hit us, our worst nightmare had come true. Just hearing that your baby might not survive after birth was devastating. We left the hospital in shock and in tears.
After a fetal MRI to measure lung growth, we met with a pediatric surgeon who spoke to us about the condition. The fact that this was a right sided hernia (it is more common on the left side) combined with the fact that it was diagnosed so early in the pregnancy made it very serious. On a prognosis scale, we were far towards the poor prognosis end. This meant that either the baby would not survive or if he did, he would face many short and long term health problems. We asked if there was anything we could do. The surgeon mentioned two things that were offered for severe cases such as ours. One was a temporary balloon tracheal occlusion surgery done in utero. The second was an Exit to ECMO procedure, performed at 38 weeks. Both were considered fetal surgeries which are still very much experimental and come with many risks. There are currently only two places in the world that perform the tracheal occlusion procedure, Belgium and UCSF hospital in San Francisco California. If nothing was done, the baby would have a less than 50% chance at survival.
After the meeting, we knew we had to learn more about the tracheal occlusion surgery. The surgery consists of placing an inflated balloon in the trachea of the fetus using a small probe with a camera. The goal is to keep the fluid in the lungs (which normally escapes into the amniotic fluid) to help them expand and grow, give the baby better chance at survival when born. We made plans to head out to UCSF to see if we would be considered for this surgery. In short, we were offered the procedure. As it turns out, it is only offered to a few couples every year. It comes with many risks including pre-term labor, premature birth, infection, etc. We made the decision to proceed with the surgery which would plug the trachea around 28 weeks and unplug at 32 weeks. We would have to stay in San Francisco for the 4 week duration. If everything went as planned, we would return home and labor would set in at about 34 to 35 weeks. We knew there would be a lot of risk, but we felt that we had to do everything we could to give this baby a chance. Although a successful procedure is not a guarantee that the baby will survive, we are praying that his chances increase.
We are extremely thankful that we have a tremendous support group of friends and family that have been praying for us. We would like to thank everyone who has been supporting us through this tough situation.
Plans were made to leave Canton and stay in San Francisco for 4 to 5 weeks. We both had to leave our jobs temporarily to make it happen, as Travis would have to care for me while I was on bedrest for the 4 weeks. Luckily he is able to work remotely via a wireless internet connection and conference call. Currently we are staying in a furnished apartment in downtown San Francisco. We will try and post some pictures soon. I cannot post the address or phone number on the internet (for safety reasons), but you can e-mail us at rosieandtravis@comcast.net or contact our parents for the information.
All Labels: | |
Post and
No comments:
Post a Comment