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Joyann, baby with anencephaly

December 5, 2002 Joyann, beloved baby with anencephaly

Part 1: Written on her 2nd birthday in heaven, Dec.5, 2004

The story of Joyann...it all started, of course, with a positive pregnancy test and the excitement and anticipation that came with learning I was pregnant again. As the mother of five living children, ranging in age from 2 to 12, I was very happy to be having another child, so we could end with an "even" number of children; "six" sounded like a nice round number of children to have. I was happy to be having a little playmate for my youngest, Jade, the only girl amongst her four adorable brothers. I was secretly hoping for another girl, that would be hitting the lotto, to have another girl just short of three years apart from Jade, so she could have someone to play with.

My sister had just announced she was pregnant at our family's weekly "pizza night" where my brother, sister, and I and all our kids get together at my mom's house for pizza or some other food. The cousins always have a great time playing together, and we grown children get a night off from cooking dinner once a week! At the time my sister announced her pregnancy, I remember thinking "My gosh, I may be pregnant too," but I hadn't taken a pregnancy test yet. I finally took the test and was so happy to see I was pregnant as well. I told my family at the next "pizza night" and we were all so happy to be having 2 new babies in the family, due only 4 days apart...

I called my obstetrician's office, who had delivered all five of my children previously, and cared for me after I miscarried my very first pregnancy, to make a prenatal appointment. Imagine my shock when they said they couldn't take me!!! Medical malpractice insurance had skyrocketed here due to all the law suits, so my doctors were no longer taking "new" ob patients. I called around to some friends and got recommendations from them on who else were good doctors in this town. None of their doctors could take me either. I started to panic. I started hearing stories on the news about pregnant women here who couldn't find a doctor to deliver their babies, and they were planning on having their babies in the fountains at the Bellagio hotel & casino, as a media stunt. I prayed I'd find a doctor! Giving birth in December in an ice-cold fountain didn't appeal to me at all. Finally, I found an ob who worked under my insurance company, who would take me. He was a stranger, but seemed nice enough. I saw him a couple times, and listened to the amazing sound of my unborn baby's heartbeat, and thought everything was fine so long as I continued to hear that heartbeat.

I remember refusing the alpha-feta-protein test when it came time, saying, "No, I don't want it. That would just give me one more thing to worry about." The nurse kept pushing the test at us (which we had never had with any of our other kids, and it wasn't a problem then.) Finally, my husband blurted out our religious beliefs and said we wouldn't terminate even if something was wrong with our child. The nurse then softened a bit and said, "Oh, so you'll take whatever God sends you?" and we said "yeah," then left, a little annoyed. The nurse scheduled an ultrasound for two weeks later, on July 11, 2002, also my nephew's birthday.

I was very sad to learn one day In July, 2002, that my grandpa had died, my mom's father. He had lived here in Las Vegas my whole life, and I love him very much. I knew he had been sick, but hadn't expected him to go so quickly. We held his funeral on July 10, 2002. It was a very sad funeral for me. All my family was there including distant family members from all over. At the time of the funeral, my belly had swelled quite large, as had my sister's and another cousin of ours, who was also pregnant. We were so excited to all be pregnant together. I remember someone took a picture of all three of us with our pregnant bellies and smiling faces....I never received a copy of that picture, though I was supposed to have...

After the funeral and family dinner, lots and lots of family pictures were taken. There must have been at least 50 children there, all grandchildren or great-grandchildren of my grandpa. He had prided himself and was very pleased with all his posterity. At one point, all 50 kids were in one place, lined up and I said to my sister, "Look at all those kids! And not an ugly one in the bunch. And none with anything wrong with them either – let's hope neither of us blows that streak" referring to our pregnancies.

The day after my grandpa's funeral, was my ultrasound. I remember being annoyed at having to guzzle down a LOT of water, then drive clear across town, on the bumpy roads with an aching bladder, to the facility where my insurance company did ultrasounds. I had never had to drink water like that with any of my other pregnancies and the u/s had been done right in the doctor's office, so this was an inconvenience. Another annoying rule this new insurance-funded doctor had was "no children allowed at the ultrasound." My kids had been to my last u/s with Jade and had done just fine, so I was mad and sad that they couldn't come this time. Of course, I had to wait quite a while for my u/s, getting quite angry because my bladder felt like it was going to explode. Finally, the curt tech called us back. "What are you here for?" she demanded. "Just a routine u/s, " I replied politely. "Well, you're only 18 weeks along," she snapped. "The baby will be too small to really see things well. It's amazing what a difference a couple of weeks can make in size. I usually do them at 20 weeks" She also grumbled about having to "squeeze me in" to her busy schedule. "Not my problem" I thought.

She began the scan and I watched the screen and recognized a few parts here and there and asked questions. She would reply with only the shortest of answers. Not a very nice woman at all, we thought and decided we would write about her rudeness on the comment cards on the way out...

I remember seeing a healthy-beating heart, two arms, two legs, all the parts in place. The tech asked, "do you want to know the sex of the baby?" to which I replied, "YES." We were delighted to learn we were having another girl! I had hit the lotto! But something just didn't feel quite right...it didn't feel I had hit the lotto. I remember seeing a circular measurement on the screen and asking if that was my baby's head. She replied simply "yes." At one point in the u/s, she asked the name of my doctor, which I didn't think anything of at the time. She then finished the exam and said "Your doctor will probably want to do another ultrasound." I said, "Because the baby is still small?" And she said "yes," So I left thinking nothing was wrong, and that I was having another girl.

I remember my mom was there for the u/s and she was so excited at getting another granddaughter. Out of her 14 grandkids, there are only 2 girls, my Jade and my angel Joyann. My mom gave me a congratulatory hug in the parking lot before she left, and my hubby and I headed for home. I kept reading the little paper I held in my hands "You will be notified of abnormal results only." I wasn't impressed with this insurance-company-doctor and the way they handled things. I felt a horrible feeling, of "Oh, I feel so bad for any woman who gets notified of abnormal results." I just couldn't imagine it.

Since the u/s appointment was clear across town, it took us a while to get back. When I walked through the door to my home, my oldest son, Jonny, said "Mom, the doctor called." I shuddered. "WHAT?" I said, "Then that means something is wrong, because they said they'd only call with abnormal results." My son handed me the paper with the doctor's phone number on it. I left my in-laws (who had been over to my house, babysitting the kids while we went to the u/s) and hubby and kids inside the house and I went out on to the front porch to call the doctor. My heart was pounding wildly... he called me right back, immediately. "This isn't good" I thought. The doctor then started talking but I couldn't really understand what he was saying. I thought he said something about a kidney at first. Then I heard the word "anencephaly. Are you familiar with it?" I said immediately, "Yes, but I was taking folic acid." "What does this mean?" I gulped. "Of the babies that are born with anencephaly, only about half of them are born alive. Most are stillborn. We usually recommend termination."

Those words still echo in my ears. I thanked him and hung up the phone. I ran in the house and screamed that my baby had no brain and would die. I was pretty hysterical. My hubby was sobbing uncontrollably, and my kids heard their baby sister was going to die and came to give their dad and me hugs. What a nightmare this was all turning out to be.

I remember the doctor had said something about the technician was very accurate when I had asked could this all be a mistake. He said I could come in to the perinatal center for a better u/s. They would make the arrangements. I couldn't WAIT to know if my baby truly was going to die! I needed to know right THEN. I called up the perinatal center and only got a recording. I left a sobbing message on there, could I PLEASE come in TODAY for an u/s. I couldn't stand just sitting there doing nothing. I grabbed my hubby and we drove to the doctor's office.

The nurse let me lay down in a patient room. The doctor never came to see us, the big chicken I thought. The nurse worked really hard and was on the phone 45 minutes in order to get me a level II ultrasound for the next morning. She gave us a hug, and we went home.

That first night was the most difficult time of my life. I couldn't sleep, I was having panic attacks whenever I thought of what they said would happen to my baby. But I came to know in my heart that what they had said was true, that my precious baby girl was going to die...

I broke the news to my mom over the phone that night. She couldn't believe it, and was crying immediately. She would take off work to go to the level II appt with us the next morning. My mil came too. We all sat in the waiting room the next morning, my mom crying while we waited. The u/s showed that my baby did indeed have anencephaly, and that there was even some exposed brain matter exposed to the amniotic fluid. They took lots of pictures and talked to us about anencephaly.

They basically lied, in my opinion, to me, my hubby, my mom and my mil. They said my baby wasn't "really alive" She was only able to live through my circulation in the umbilical cord. I thought "yeah, right" and asked "Well, how can she move and kick then???" They said it was all due to the circulation through the cord, and that made no sense to me and still doesn't. They likened it to I was her life support. I thought of patients on life-support, lying motionless, out of it. That isn't like my baby at all, I thought! She moves at will and is very much alive. I really resent the u/s tech at the perinatal center and even at the hospital trying to paint a false picture of anencephalic. babies as not really alive, that they only move when the amniotic fluid pushes on their exposed brain or spinal cord. Hogwash, I think. My husband interacted with Joyann and she would punch out on my stomach, and he would push in that spot, then she'd go "bam bam" real hard back in the same spot. Seems to me, if it was all random, sporadic movements, the baby wouldn't be able to move in the same spot in very controlled movements like that.

I feel the doctors just want to "dehumanize" our babies, so they can justify ending their lives, just my opinion on the matter. The perinatal center pushed termination big time. They offered a D&C, saying one doctor in town "may be able to pull the baby out in one piece." I said "certainly not!"

They then talked about induction, of giving birth to the baby after they medically induce labor. I had never heard of this before and thought it sounded better than abortion per se. I gave them permission to see if my insurance company would cover the procedure.

A few days later, I got a phone call saying it was arranged for me to come into the hospital and deliver my little baby that Friday! I said "No way. I'm not ready yet!" They pushed me, saying, "well, it has to be done before 24 weeks." I said, "well the perinatal center said I could be induced at ANY time in my whole pregnancy, from now until full term." "Well, the hospital won't do it past 24 weeks" so then it all started to sound like termination to me. I finally told the gal to cancel my appointment, that I needed time to think about it. She said it was difficult to get a slot at the hospital and was really pressuring me. I finally said "I have deep religious beliefs and need to pray some more about it." She then understood and said "sometimes when we pray, it's nice to wait for an answer. So I hung up and never spoke to her again.

The decision to carry my Joyann to term wasn't one made immediately. It was more of a process, honestly. Since my diagnosis day was in the middle of the summer, we happened to have a week-long vacation scheduled up in the mountains of Utah. We went on this "vacation" though it was more of a nightmare time than a vacation. We were armed with lots of books on anencephaly, stories printed from the internet and our scriptures and other spiritual books. We talked and cried and pleaded with God for help.

Over the next couple weeks after diagnosis-day, I came to know I would carry Joyann as long as possible. I wasn't ready to let her go, and I knew that once she was out, if I changed my mind, there was no putting her back. I decided to go the natural way, let nature take its course, let Joyann decide the day she would be born.

As the weeks flew by, and they did go pretty fast, I was really glad I had decided to carry Joyann to term. The women on the internet were so loving and helpful and understanding. I spent many, many hours on the internet at my support groups. I also read a lot, wanting to know everything I possibly could about anen. And about what to expect. I was terrified of Joyann's upcoming birth. I didn't know how I could possibly go through a labor, then watch my precious baby die, then have a funeral, then a burial, and how could I ever survive all that.

In the course of my pregnancy, the whole medical malpractice crisis resolved itself a bit, so I was able to go back to my "old" doctors who had delivered my previous children at 28 weeks in my pregnancy. I am soo grateful for that! I felt so much more comfortable there than I had with the other doctor.

Finally the day to meet Joyann arrived after nearly 5 months of waiting!

PART 2: Written Dec. 8, 2002, a few days after Joyann's birth.

I started into natural labor out of nowhere on Wed., Dec.4 at around 6:30 p.m. The pains started right off coming 4-5 minutes apart and were regular. After an hour and a half, I called my doctor to alert him. I also told him that I tend to dilate very slowly. He said he'd alert the nurses that I may be coming into the hospital that night. He said to come in when the pains were 2-3 min. apart and lasting 45-60 seconds. As soon as I hung up with the doctor, the pains got real puney and about stopped, slowed to about every 15 minutes. At 9:00 they started right back in every 3 to 4 minutes apart. We then called everyone and went to Bill's parents' house since they're only blocks away from the hospital. We put our kids to bed there and after much nagging by my hubby we went to the hospital. I figured I was dilated to a 1 1/2 and they'd send me home, but at least I could get the paperwork filled out while I was still able to talk. We got to the hospital at about midnight and a nurse checked me. She said she had to get another nurse to check me just in case because her finger was injured and couldn't feel.

Anyway, I was already dilated to 7-8cm! This isn't like me. The first nurse with the injured finger was telling us that 3 months ago she lost her grandbaby to anencephaly. Her dil had decided to induce early. She said that the doctors I go to had diagnosed her grandbaby with anencephaly and that they hadn't had a case of anencephaly in like 5 years and now there have been 3 fairly recently. Makes me wonder if there isn't something in the air or the water.

But I love my baby Joyann so much that it doesn't matter. I wouldn't give up having had HER for anything, anything in this world. I enjoyed being with her and holding her SOOOO much. She was a special angel not of this world and the peace and joy she brought to my life is indescribable.

Anyway, I was going to get an epidural (I have with all my previous 5 pregnancies) but they couldn't even find my veins to get the iv started so they were poking me to death on top of the contractions that were pretty bad about then. My hubby got tired of the poking and asked them to check me. I was fully dilated! Everyone told me that the labor was the hardest part and that the pushing would be "a pleasure". WRONG!!!!!!!!!

I did ask the doctor to break my HUGE bag of water with a pinprick. He asked if I could tolerate a speculum so he could use a needle to do so. I told him yes and we tried. The water squirted out like out of a squirt gun and hit the Dr. But the hole closed itself back up. Later on, the doctor had to break my water with an amnihook. He said the bag Joyann was in was like titanium. When my water started to come out, it really CAME OUT. My hubby said it was like someone turning on the faucet of the TUB. It went on and on, over the table, onto the floor, on my feet, everywhere. That was only half of it! Joyann was blocking the other half in and when she was born it came out again all over everything. The dear doctor had his hand up making sure her cord didn't come down. Her heartbeat was fine after all this, thank goodness!

Then came time to push. The only regret I have with everything is that I didn't get an epidural! You see, we didn't know my Joyann was coming posterior and was dang near impossible to get out. I was in terrible, unthinkable agony pushing for 2 hours. I went into the twilight zone. Finally my body felt like it turned itself inside out and started shaking violently.

Then, FINALLY, my angel girl was born. She emerged at 3:44 a.m. and the sweet nurse took her and wiped her quickly and put a bonnet Brenda from ABFA made on Joyann's head--no cap underneath. I asked if the baby was okay and the doctor said, "No, I'm sorry. The baby didn't survive the birth."

My husband started sobbing hysterically and they about made him sit down. I felt Joyann's spirit with me telling me it was okay and I didn't shed a tear and was trying to tell my husband it was okay. Then the nurse said Joyann had a faint heartbeat still, and I was really confused. I got to hold her in my arms and I FELT her life within her... she was still alive!!!

I looked instantly at her face and felt tremendous love for her, love not of this world. I saw her little purplish lips first... they were identical to my husbands! Beautiful! Perfectly formed! Her little nose was like my husband's too, but much flatter. Her eyes were quite large and bulgy but I didn't care in the least.

I loved her and she was the most beautiful person I have ever laid eyes on!

Once she was in my arms ALL I saw was beauty! She had so much beauty, I can't describe it in words. Her anencephaly wasn't even that bad... the u/s was deceiving. She had thick skin on the whole top of her head that I could see under the bonnet and so could the kids and those few select family members we let in to see her briefly. She even had an inch of skull flat over her eyes on the top of her head. Joyann had a beautiful, perfect body, the cutest hands and feet in the world and everything just absolutely perfect and precious. She weighed 5 lbs, so we couldn't do the heart valve donations after all. She was 17 inches long, just precious and petite, yet chubby with a double chin and soft, soft cheeks that smelt so good.

She never took a breath, but she died in my arms. My husband saw a bit of slobber run out of her mouth after I had her a few minutes, but I didn't know when it happened. It was like she just went to sleep. I felt so much comfort that I just was able to enjoy my time with her. I had never prepared to have her live a few short minutes. It seemed like seconds, but it was actually minutes. I'll have to see what the birth/death certificates say in regards to time of birth/death. It turned out to be four minutes she lived.

My kids came in to see their sister, but since it was the middle of the night they were real groggy. Only my 10-yr. old son, James, held Joyann. My mom and my mil and fil and Bill's cousin and aunt and my pregnant sister came in to see her, but only the 2 grandmas held her. My daughter Jade was very groggy and disoriented, but I got Bill to bring her to me on the bed while I was holding Joyann. Jade finally looked at baby Joyann and started touching Joyann's beautiful feet and hands and I motioned for my son, Jason, to take a picture of her, since if I said anything Jade would stop what she was doing. I have some precious pictures of Jade touching her little sister. The next morning Jade couldn't remember seeing Joyann, so the pics will help. Jade said the next day, "Mommy, baby Joyann is not in your tummy anymore because she didn't kick." Then later on she asked where her baby Joyann is. I asked her, "Where did mommy tell you she is?" She pointed up to the roof and said, "Heaven." I said, "Yeah, that's right." Then yesterday Jade came up to me and said, "Where's my baby Joyann? I didn't get to love and kiss her." Then today Jade said she never got to change Joyann's diaper, so if things work out, Jade can put a diaper on Joyann in the mortuary Monday. We're going in with our kids and the 2 grandmas (on my mom's b-day) to dress Joyann for burial.

Joyann's funeral will be held on Tuesday, Dec. 10 at 11:00. Bill and I woke up comforted this morning as we had to go to the funeral home and make arrangements. Joyann comforted us (and the Lord of course) and we were able to do so without crying. We even ordered her headstone and the man said he would work hard to have it there for the funeral!!!! I am so glad about that! I never dreamed they could have it done so fast, but they do the work there themselves, thank goodness!

We took lots of pictures, but I'm disappointed that most didn't turn out... you couldn't see Joyann's face, only her mouth and nose. :(

The hand/feet molds are adorable, priceless!! But one of her right foot had a big air bubble and only got the heel! GRRR!!! We may buy one more kit and see if the mortician will try and get it for us, even if it's not how it was at birth, we'd still like to have it.

I am sooooo glad Joyann made it to fullterm!!!! We were able to see her features and distinguishing characteristics and it was wonderful for us! Joyann has the characteristic crooked pinky that my mom and son, Joseph, share!!! How wonderful to know this! Another funny thing is that when the nurse took Joyann's little footprints for the hospital birth certificate, not all of her little toes showed up. The head nurse was mad and tried on 3 different birth certificates until she got all ten toes to show up! It turns out that on her left pinky toe, she has the same thing as my hubby, her little toe is kind of sideways! Her other toes are just like mine except for the baby toe. We just loved her sooo much and enjoyed her so much words cannot express how she has forever changed our lives, for the better. What a great blessing my angel baby was and is!!!

I know this probably sounds crazy, but I am so full of peace and joy at having been blessed with her special spirit that I don't regret anything, not the difficult pregnancy or delivery, nothing. It was all worth it. I enjoyed my angel so much and she felt so GOOD to hold that it was all worth it!

I know I have to mourn and grieve and that I'll have bad days but right now I just feel blessed, to be honest. Of course, I'm terribly sad and miss my Joyann so much I can't stand it... I almost had to go to the mortuary to see her yesterday as I kinda freaked out, needing to see her again. It's very hard to squeeze a lifetime of memories into one day. My hubby and I kept our angel Joyann with us for 10 hours after she died. She didn't bother us in the least... we held her the whole time and marveled at her unbelievable beauty.

The nurses and even the lab techs were all wonderful and wanted to see our baby and were so kind and loving to us. They gave us a little crocheted blanket for Joyann that she laid on and I sleep with; they gave us a memory box with a lock of her dark brown hair (like mine :)) Her hair was soft and fuzzy. She had hair behind her ears and I rubbed it.

She had actually pretty mild anencephaly afterall. The nurses took pictures of Joyann with a little ring on her finger that we got to keep and with a beaded bracelet in pink and blue that said BABY. They dressed her in a little t-shirt that was open in the front and a matching cap with a ball on the top. They put an extra set of the t-shirt and other memorabilia in a little purple memory box for us to take home. The nurses looked at her and said, "to be honest, I don't see why this baby didn't live."

I know that all of this is part of God's plan and that though we may not see the reason why now, we will some day and it'll all make sense. It's like the parable of looking at the back of the tapestry under construction and seeing nothing but knots and different lengths of thread representing different lengths of life and seeing complete chaos. But when you get to the other side of the tapestry, you see the whole picture and the beautiful design being created by the Master's hand.



Last updated April 8, 2019