Jonathans Gastroschisis Page

Hello and welcome to our Website. This site has been around since early 1999 when we first found out our unborn child had Gastroschisis. Since then the site has grown tremendously. We have heard some heartbreaking stories, and some very encouraging ones. It has grown far beyond what I expected. I as a father felt as though I had to be strong for my wife, therefore I had to hide how I felt. This website was my way of expressing myself. If there was ever anything in my life I was glad I did it was this website. It has helped us tremendously, and I know it has helped many others alot also. It has been developed from a site with our story to a site for sharing experiences and giving support. I learned some basic HTML from a book and a few weeks later the site was hatched. As a testiment of how much this site means to me and how I feel personally close to each and every person who visits, every word and button and link has been personally hand typed by us. I used no programs to make my site for me. In the following paragraphs you will read our story as well as have the opportunity to read others experiences and get in touch with people just like you, people who are trying to deal with Gastroschisis. There are pictures, links, information, support, and much more to come. Please continue reading. And even if you dont sign the guest book please stop by and read it as I believe it is one of the focal points of our site. God Bless you all.

About May of 1999 my fiance came to me complaining of not feeling well. The symptoms were morning sickness, being tired all the time, etc. After talking about it for a little we decided to try a home pregnancy test. The results were positive. At that point and time and this being unplanned we were both in shock. Our lifes had just changed forever. We decided to take a few days to think about things and put them in perspective.

After a few days of dealing with this new news, telling our families and getting over the initial shock we realized what was happening. Our love had created a miracle. We created a child that would rely on us to protect it from harm and nurture it. We started to become very excited. We started looking at all the little baby things we could and would have to buy in the upcoming months. We would lay in bed at nights and do nothing but discuss baby names. We were having so much fun with all this. We saw a future with a silver lining that had 10 little fingers 10 little toes and a smile that was sure to win everyones heart over at a mere glance. We started going to the doctors, we were both at each appointment watching the ultrasounds with smiles from ear to ear. We would always try to figure out where the body parts were, even when it was nothing but a mere lima bean shape. It was one of the best feelings a person could have, going through all that together anticipation growing as each week/month would go by. The belly was getting bigger, and the happiness we felt couldnt be taken away by anything. Or at least thats what we thought.

Approximately 4-5 months into the pregnancy my fiance noticed some spotting/blood when she went to the bathroom. We called the doctors and they instructed us to go to the hospital for an ultrasound to make sure everything was ok with the baby. At the hospital while looking at the ultrasound through ammature eyes and smiles on our faces at the sight of our almost fully formed child we were told things looked basically ok. We were asked to wait at the hospital until the doctor called over for the results. 2 1/2 hours later the doctor still had not called over for the results so the hospital told us to just go home and said someone would call us with the results. All the way home we were beaming in delight as we talked about what we saw and looked over the ultrasound profile we had been given. Almost immediately as we walked in the door at home the doctors office called. They said as of then everything looked ok, the ultrasound was going to be looked over some more and if they found anything else we would be called. We were happy and relieved that our baby was ok. That was the last we heard from or saw the doctor until her regular visit the following month. At her appointment the doctor asked if anyone had called us concerning the ultrasound and we responded telling her exactly what they told us. Then she spoke the words I believe my fiance and myself will always remember "I hate to be the bearer of bad news" and at that point I think I actually saw happiness walk out of that room as our hearts sank to the floor. The doctor explained it looked like the baby may have a rare defect called Gastroschisis. She apologized to us for not being called and informed of this situation. She then told us this condition was a rare prenatal birth defect in which the inner organs of the abdominal cavity were on the outside due to the Abdominal wall not closing. She explained to us some of the possible outcomes of Gastroschisis. She basically told us the percentages of babies who survie to birth with this defect which at that point did not encourage us at all. Then she explained about the surgey and the hospital stay they baby would have to undergo, and the risks involved. So in not so many words she just sat there and told us that even if our baby survives to be born, then it was still in great danger after birth. We were crushed. My wifes eyes welled up with tears, I have a conditions where if I get to nervous I laugh, and laugh I did. It certainly was not a happy laugh. She took every bit of excitement, every bit of happiness and just squashed it all in one session. It only took the doctor a second to realize where this laughter was coming from. She set us up with an appointment with a specialist at the Pennsylvania Hospital in Philadelphia. By this time we both had tears in our eyes and did not know what to say. We came home and both cried. The next couple days were very hard for us. We sat down with each of our families and told them the news. Everyone was in shock, what could they say, what could they do....nothing...the same thing we could do. It was hard for everyone. After this, everyone was scared to have a baby shower or even start buying stuff for the baby. It was the most heartbreaking time in our lifes.

About one week after the doctors appointment we got in the car and started out on a 3 hour drive to see a specialist in Philadelphia. We arrived at the hospital in very somber moods filled with hope that all this was one big mistake and that the original tests were wrong. We signed in with the receptionist and patiently waited our turn. In the room I sat right next to the bed holding my fiances hand and praying at the same time. The doctor pointed everything out to us as he saw it. Then he pointed out what brought tears to our eyes again, he told us the baby does have Gastroschisis. After the test we were asked to wait in another room. When the doctor returned he brought another specialist with him. The closed the door and sat down. Our hearts dropped, we knew inside that had it been good news he would have come in and told us to go home and be happy, everything is ok. But thats not what he did. They explained more about this defect to us. The baby is at risk of still birth due to it not getting the proper nutrients from the cord. Once the baby is born it will have to be rushed to Childrens Hospital of Philadelphia for surgery as soon as it is stable enough. With that comes the danger of infection and the baby dieing from that. So basically we were told that we have to just sit and pray that our baby survives until birth and then if it makes it that far we have to sit and pray it makes it afterwards, it was alot of the same information that the first doctor told us but in alot more detail. We were devastated we did not know what to say once again and our eyes were filled with tears.

Before leaving the hospital we decided to ask the doctor to write down the gender of the baby on a piece of paper so we could look at it togther later on. Up until this point we did not want to know the gender of the baby, not even at the beginning of the tests when the doctor had asked us. But with all the bad news we had just received we wanted something to be excited about so we changed our minds. We wanted something more to think about our unborn child then just a sick baby in the womb, we wanted to give it a name, we wanted to make it a person. We left the hospital with barely a word being said between us. As we got over to the parking garage we decided to look at the paper. It said "IT'S A GIRL!" We both started to cry again and gave eachother a very big hug. We were told that day that we will have to go to many doctors visits so they can keep monitoring the baby to make sure it is ok. We drove home very sad and when we got there sat down together with our families and explained things the best we could, hoping for their support.

Well for a long time after we found all this bad news out we had stopped looking towards the future. We couldnt look past what was wrong, we couldnt look past what could go wrong. We were dealing with things day by day and thinking of things like this web site that we could use to try to help our baby boy. Things we could turn into something positive in a world of negative. We both had trouble sleeping at night, she has trouble falling asleep and I just plain had trouble sleeping. I slept an average of 2-3 hrs a day. I slept as little as 1/2 hr a day to none a day and sometimes alot more. I woke up from nightmares with tears in my eyes. This was all very scary to both of us. We would go to each doctors appointment in somber moods...sometimes barely saying a word to eachother. Our baby could die, what could we do. These were the things we were thinking about. And of course we went through the whole, what have we done to cause this, what could we have done differently to prevent this. There has to be some way we can help our baby. The whole self blame thing was the biggest thing we had to overcome. The doctors kept assuring us that it was nothing we had done, nor anything we could have done to prevent it. As distraught as we were their words pretty much fell on deaf ears. It was horrible day by day, waiting for the baby to move, and if it didnt move to often calling the hospital in fear that something was wrong, dealing with the guilt on a daily basis that no matter what anyone said we had to be somewhat at fault. Day by day it was getting harder and harder to deal with, we were both constantly on edge, Kristy would lay down for hours just waiting for the baby to move. There was so much anticipation, so much fear, so much disappointment, they could be matched by no other emotions. I dont know if I will ever feel these emotions so deeply again in my life.

Well we have decided to name him Jonathan. We decided to create this web site as a way for me to express myself and to ask everyone who reads this for help. Thats just what this web site did. It got us in contact with people all over the world familiar with Gastroschisis. It gave us support. We asked for prayers for our Jonathan every day. We asked that people keep him in their hearts. We asked that anyone who knows someone who has been through something like this to contact us. We were just 2 very scared soon-to-be parents that were not sure under the circumstances how they were going to make it through all this. We didnt know how we are going to make it mentally. I pleaded for any kind of help, and thats exactly what I got.

If you have anything at all you could like to contribute, Info, advice, a prayer, etc. You can contact us by e-mail at the addresses below. We thank you again for taking the time to read our story. Please make sure to read the updates page that has more detailed information Doctors appointment, Jonathans birth and his progress.