Jessie with Mom and Dad

My name is Julie and this is the story of my son Jessie Clay James. I was a mother of 2 beautiful girls, Cheyenne 11, and Loretta 8, and I was pregnant with my third child. Finally the little boy I had always wanted. I had never heard of anencephaly, nor did I ever think I would have any problems with my pregnancy. After all my first two pregnancies went without problems and both my girls were born healthy.... so no worries I thought. At first everything was just routine. Missed my peroid, took a home test, ok so I took two of them. I sent my boyfriend a picture message of the positive tests, and we were excited. I went and got the conformation from the dr. and started my prenatal vitamens just as I had the previous pregnancies. At about 3months I started bleeding, we went to the er, but they couldnt find a reason why I was bleeding. It happened several more times before the er dr finally did a ultrasound on me. He then sent the results to my dr. and said we should ask her about having a formal ultrasound. I was right at 5 months by this point. The dr. sent us in for the formal ultrasound, it was at this point I knew something was wrong.... as I laid there the tech pointed out everything on the baby... this is the little left foot, here is the little right foot, and so on.... until she came to the head. It was at this point she told me to roll over so she could get a "better look" he would be in a "better position". After the ultrasound was over we were asked to wait until they contacted the dr. to see "what we were going to do, and if I needed to go to the hospital or go home". Now I was scared, but they came in and told us we could go home and our dr. would contact us with the results. My mom and I left the ultrasound office worried. We got a call from my doctor the next day. She left me a voicemail saying that Jeromey, my boyfriend, and I needed to BOTH be there for the next appointment to talk about what we were going to do. What was that supposed to mean?? Now all I could do was worry and cry. The fastest they could get us back in to see her was a week away. Jeromey came down to my house, he lived about an hour away, and we went to the appointment. The docotr walked in and said "Your baby has anencephaly and has two weeks to live. Any questions?" We were in shock to say the least. What is anencephaly? How did my baby get it? How do we heal it? Wait, what did she say two weeks to live? about a million questions went thru our minds at this point. The dr told us we had two options, but to us they were no options.... We could either go to Kansas or Texas and have an abortion, because I was too far along to have one in Oklahoma where we live, or we could carry to full term. Abortion was not an option, and that is what I told her. We will carry to full term, but we were also going to change drs. We left the office without anything to say to anyone or even to eachother. Up until this point we had been trying to decide on a name for our son, and not agreeing on any name either one of us suggested. The ride was a silent one with only weeps and tears, until half way home Jeromey simply said Jessie Clay James. I just looked at him and said ok. We went straight to my moms house and told her, and Jeromey made several calls telling family and close friends the news we were just given. I went straight to the computer to look up the word anencephaly. This was a huge mistake. The first thing that popped up are terriable pictures. OMG this is what we have to look forward to. She must be wrong.

We started looking for a new doctor, one who had knowledge and experiance with anencephaly births. We found one, her name is Dr. Lofgren, out of Tulsa. We made an appointment. She sent us for a second opinion ultrasound. We went to the second ultrasound and this kind tech showed us everything, even his little head. She then explained the shape of the head, and about how much of the head and brain she thought was there, and told us the amount of the brain is the deciding factor on how long he will live once he is born, that is if he was not still born. As hard as it is to hear these things, we needed to hear them and start preparing for this birth, and death at the same time. This was a very nice and caring expert who was not rude in her comments like our first dr was. That makes things easier to deal with. She also told us there can be several factors in why anencephaly occurs, but no real fact as of why. She asked if we had been in a hot tub around the time I got pregnant.. and yes we had...alot. Then she asked me if anyone else in my family or in Jeromeys family has ever had anencephaly or spina abifida or anyother birth defects. No. now what? She said not enough folic acid is another cause, but most people are not folic acid deficient. Woud I like her to give me a genitic test to see if I am? I told her yes. Come to find out I am. I was told I am very lucky that I did not have any problems with my first two pregnancies, since I was not taking extra folic acid pills while pregnant with them.

I kept getting online trying to find someone, anyone who had been thru the same experiance we were going thru now, and I found ppfl site. I sent an email to Mary as soon as I found this site. It might seem odd to some people, but after talking to Mary, I felt better. She sent my email to a couple of ladies, AND I THANK THEM ONCE AGAIN FOR HELPING ME THRU MY PREGNANCY!!!!!, and these ladies were so nice and answered any and all of my questions. Finally it was so great to talk to someone that had been thru this and knew what to expect, and could answer my questions. This was the help we needed to put our mind at ease some.

As much as we didnt want to, we sat down with the funeral home and went ahead and made arrangements for our son. My cousin gave us a grave site right next to my gma and gpa, and my moms twin sister. The funeral home was so great with us. Come to find out Randy, the funeral home owner, his daughter had a baby with anencephaly so Jessie would be the second baby he had at his funeral home with it. This comforted us, because he knew what we were going thru and was very understanding. He did not charge us for anything. Not the services, casket not his fees, he paid for it all, Thank you Randy for your help as well. Well not that we wanted to think about it, but this step was done and we were just waiting on July.

July came and they induced me. The delivery was supposed to be as comfortable as possible is what Dr. Lofgren told the nurses, she has enough to deal with as it is. She told us she had any and all medications that I could possibly need to be as close to pain free delivery as she could get it. She came in at 6am to start my drip, and said she would be back to check on me later in the day. It was noon when she came back and went ahead and broke my water, went to the waiting room and told friends and family that they could go eat or what ever it would be about 5 or 6 hours till I delivered. Most of the family left to go eat, including Jeromey.

I had my dad call for the nurses a little over an hour later because I felt like I needed to start pushing...... and that was exactly it. Bad part was no one could find Jeromey, he had left to go eat. The nurses made a mad dash looking for him and found him just in time. As he came in I was just starting to push. We delivered our angel at 1:38pm on July 10, 2009. Jessie Clay James weighed 4lb 0oz and was 16 inches long. As soon as he came out the dr. put a little cap on him and handed him to me, I held my son until I couldnt hold him no more, I was pretty medicated since my epidural did not work, and I was seeing about three of him. No sooner than I handed him over to the nurse he left us to go to his heavenly home.... Our little angel had a heart beat for 27minutes, and never took one single breath.... he passed away at 2:05pm.

We are very thankful that he was not stillborn. We wanted him to be born alive, yet not be in pain and that is exactly what we got. We kept him for the next several hours taking pictures and loving on him and taking in every aspect of his little body. To us he was perfect. I have to say I was very worried about looking at his head, but I could not help it, he was my son and no matter what he looked like I needed to see it. And I was so suprised, his head was nothing like the pictures I had seen on line, his head was not there just above his eyebrow all the way to the start of his neck, but not like I pictured it. Everything was made on him just like it was meant to be formed around his skull and as whole as it could be. I was glad I looked cuz the picture in my mind was way worse than his poor little head actually was.

The funeral home came and picked him up from the hospital. I could not give him to the funeral home guy, That was like losing him all over again. We bundled him up in his recieving blanket, and gave him the nurse.... Kissed him and told him we loved him and watched them leave the room......

We had to go shopping because the clothes we had picked for him to be burried in were WAY to big. My mom and I went and finally found an outfit that was for a premie, and it was still to big but they said they could fit it to him. We picked out an OU onesie and a OU benie OU socks and even little OU shoes. I had a good friend make him a special OU blanket to wrap him in, in his casket. She even put his name on the front of the blanket.

The funeral home did a great job. The funeral was as good as could be expected, but the biggest thing I remember of that day was the huge sigh of relief and weight that seemed to be lifted off our shoulders. All the worry and wondering and the what if's and how do's were gone.... only the grief was left.

I always remember asking How long will I cry, and everyone telling me it gets easier. Its now been a little over two years and truely it does get easier, but there are days that I still cry for no reason. And at just the drop of a hat I can be in tears. I miss him everyday, and go the the cemetary all the time and talk to him. As for a reason this happened to our son I cant tell you because I do not know, all I do know is God knows the answer to that question and one day as im holding my son in my arms again at heavens gate this question will be answered for me. Until then we have to go on with our lives.

We were worried about trying again to have a baby, what if it happens again? Can we deal with all this again? Well we decided to go ahead and try, and fully folic acid'd up, we delivered a very healthy baby girl on December 7,2010 at 3:03pm. Tara Elizabeth James weighed 7lb and 3oz and was 20inches long. She lookes so much like her brother that it is hard sometimes. While we are excited for all her "firsts" it also makes us sad we had no "firsts" with Jessie. She has helped us to try and move on with life. Even tho we love Tara as much as we do, no one can ever replace our baby boy, Jessie!!!

Back to Anencephaly Stories

-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.