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My journey with Gabriel John Newman

Gabriel John Newman, baby with anencephaly

Karl, my husband of fifteen years, and I had tried to conceive for about ten years before becoming pregnant with our firstborn son, Colby. We went back and forth to fertility specialist during these years and had just about lost hope. In 2001, we found out the artificial insemination process had worked. We gave birth to Colby Drue on December 4, 2001 weighing 9 lbs. and 1 oz. We felt extremely blessed but felt sure he would be our only child. Considering, I had been diagnosed with polycystic ovarian syndrome and Karl with a low sperm count; the chances of becoming pregnant on our own were slim to none. Additional fertility treatment was out of the question due to the fact we had spent a small fortune in trying to conceive already.

Prior to having Colby, Karl and I had purchased a business for me to run and operate. It was a small time “mom and pop” convenience store and deli. We had moved back to our small hometown where there was little opportunity for someone, like myself, with a degree in business. Karl has been working in law enforcement for years and on the side, he raises beef cows. Owning my own business was great, but when Colby came along, I was ready to be a stay at home mom. Unfortunately, we weren’t able to sell the business at that time, so my mother had to step in and help care for Colby.

As time passed, I thought how I would love to have another child. I didn’t want Colby to be an only child. I cherish the relationship I have with my brother, Jimmy, and sister, Vickie, so much that I couldn’t imagine being an only child. So, I began to pray and ask God to please bless us with one more child. After all, I was 34 years of age and not getting any younger.

Then it all began on Thursday, July 8, 2004, when I took a home pregnancy test and it was positive. In fact, I did the second test just to be sure, and it was positive as well. I had been feeling tired and exhausted for weeks. Also, I had been nauseated, which was a rare thing for me because I love to eat. I couldn’t believe I was pregnant. We had become pregnant on our own! Colby would be 3 years of age when the baby came, I was going to sell the store and stay at home with both of them. How perfect it all seemed. My prayers had been answered.

I called Dr. W. the same day, because Dr. H.’s Office is closed on Thursdays. I told him about the test. He told me to come in Friday and do the blood work to confirm and check the numbers. The numbers were all good and I was to go back in a week for an ultrasound to determine how far along I was. Friday, July 16, Vickie, Mom, Colby and I went back to have the ultrasound done, and everything looked fine. Dr. W. said it appeared to be about 7 ˝ weeks along.

Other than being tired and nauseated, everything was going fine. Then on October the 4th, Dr. H. called to inform me about my blood work from the triple screen test. It had come back abnormally high. He scheduled an ultrasound to be done the next day at North Oaks Hospital. I was scared.

Karl and I went the next day to North Oaks. As the technician looked at the baby, I bombarded her with questions. I had read if the test was high it could be a neural tube defect so I asked her if she could see the spine and if it looked normal. She told me that it looked good. I asked if she could see fingers and toes and if they looked normal. She said they looked good. Then I asked if she could see the heart and if it looked okay. She said it looked good. After that, I asked if she could see a brain and how it looked. She said she saw brain tissue, but she never said it looked good. She finished and told us to let her go get someone else and that she’d be right back, because two heads were better than one. I knew then, we were in trouble. She came back alone and asked if I was going home. I told her yes. She said she had tried to get me in upstairs to see the Maternal Fetal Medicine Techs but couldn’t. Since, she couldn’t tell me anything, she told me to call Dr. H. when I got home because, she had talked to him.

Karl went on to work. When I got home and called Dr. H. he sounded a little disturbed. He said it appeared to be a neural tube defect and he was sorry. The earliest appointment he could get me was within a week, on October 12, in Baton Rouge.

October 12, Karl and I went to Baton Rouge to see a Maternal Fetal Medicine Doctor by the name of Dr. Newman. I thought this odd to have the same last name as our own. At this time, I was 20 weeks along. He did the ultrasound, looked at me, and told me it was anencephaly or acrania. Karl asked how sure he was, and he told us he was 100% sure. Karl lost it and I was pretty much in limbo. Dr. Newman told us that I didn’t have to carry this baby full term and we could terminate because the baby was “incompatible with life.” He told me how sorry he was. I asked for the sex of the baby and he told us if he had to guess, it was a girl. He told me to get dressed and he’d see me outside. Karl went to the bathroom and tried to pull himself together. We went out and there was a nurse waiting to show us to the door. She had this “I hate it, but don’t know what to say look” on her face. There was no sign of Dr. Newman. I guess he was on to bigger and better things, so we headed to the front desk. I gave the lady my piece of paper, and she told me to come back and bring a picture. If only she could have known.

We left the hospital, and I called Dr. H.. He told us to come on to his office. We went in and sat down to discuss this with him. It was then that I began to break down. He explained the situation, and in the best interest of the mother’s mental health suggested termination. I immediately told him it was not an option. As long as the baby had a heart beat, I would give him or her every chance possible. I felt God had given me this baby, and I wasn’t going to take its life for my convenience. Then Karl asked for a second opinion. I immediately told him and Dr. H. it was not necessary. Well baby or not, I was carrying the baby to term. Dr. H. told me to take a week to think about everything and come back.

For a week, we cried, prayed, and consulted family and friends. Nobody tried to push me one way or the other. I felt God would want me to carry to term. Thank God, Karl wanted this, too. When I went to Dr. H.’s office the next week, Margie, his nurse, started to escort me into Dr. H.’s office instead of the examining room, I stopped her and said, “You need to weigh me, I’m not aborting, and I’ve already urinated in the cup.” (Checking the urine for sugar and weighing me was routine each visit.) I think Dr. H. was a little shocked and so was Margie. I got up on the table and told them I wanted to hear the heartbeat. There it was, that galloping sound racing away. So, as I tried to fight back the tears I began to ask about how long she would live, (we thought it was a girl, especially after reading most are found to be girls), if we could donate the organs, and what were we going to do to get the baby out, since Dr. H. had made the statement some woman have been known to carry these babies a year. He answered by telling us life expectancy was only within a couple of days, most, only live a couple of hours. He said use of the organs was a tricky question, but he would check into it. He also stated we could induce labor at 38 weeks. With all this being said, he told me he’d treat me as he normally would, keeping my health in his best interest.” I gave my thanks to him for understanding and let him know if I ever came and there was no heartbeat, or if I failed to feel movement, then we would act sooner.

The weeks went by and I prayed a lot. I still was nauseated and sick from time to time; however, the baby moved all the time. This baby moved more than Colby and was a harder kicker. Being, we still had the store, all the customers, family, and friends found out; therefore, for at least a month; I cried and told the same story over and over. Finally, a local family from the community had agreed to buy the store at the end of the year. Thank the good Lord, because I felt like my world was crashing all around me and I wasn’t sure if I was going to be able to handle the pressure. It is said, God never gives us more than we can handle and surely, He knew I couldn’t take much more.

I finally came to terms with the fact a miracle may not happen; but, I still prayed God might heal my baby. I cried myself to sleep many nights. I tried to act strong but then the anxiety attacks would get me in my sleep. I woke Karl up with my heart racing, freezing chills, and shaking the whole bed. Karl was taking a toll with the stress of his job, me, the baby, and the store. Little by little the time grew nearer.

Through a good customer and friend I was able to connect with Lorraine Mehltretter at Duke University who was doing research on neural tube defects. We planned to participate in her study in hopes the research may find a cure or prevent this from happening. This allowed me to have some positive aspect to dwell on.

Also, through my visits with Dr. H., we were able to connect with LOPA (Louisiana Organ Procurement Agency) to see about donating the baby’s organs. The baby had to be full term and weigh at least 8 pounds. Being Colby was 9 pounds 1 ounce; I felt the baby would be large enough to possibly save someone else’s baby. After all, if I couldn’t bring my baby home, maybe someone else could.

We sold our store on December 30, 2004, and I went home to prepare for what I was about to face. January 25, 2005, we went for our final ultrasound by the maternal fetal medicine doctors who came to North Oaks Hospital. The nurse who did the ultrasound was someone I had known years back and hadn’t seen since. It was nice to be comforted by a friend. As she examined the baby, she pointed to the screen showing all the parts of the baby. To our surprise, it was a boy, not a girl. This was somewhat a shock because we thought it was a girl. Clearly, his head was not round and perfect. Our last hope for a possible mistake, or for a miracle to have been performed, was shattered. It was as they said anencephaly. Just looking at those tiny fingers and toes and heart beating away, my heart just sank, because I knew our time together would be very short. Naturally, I was scared to death of how I was going to get through this.

Three weeks later, I went to see Dr. H.. He had told me he would not let me go past 42 weeks, and we could take him as early as 38 weeks. He said most anencephaly babies tend to not want to come down, and it has been known for mothers to carry them for a year. When I went in, I told him I was ready to set the date. All looked good with the baby and I felt it was time. Dr. H. was hesitating because he said three weeks ago the baby was transverse and was not in position. However, we could schedule to go in tomorrow, February 16th at 6 a.m., have another ultrasound done, and if the baby’s head was down we could proceed. If not, we would need to wait another two weeks. We had already discussed the fact I didn’t want to do a cesarean because of the recovery time and trying to deal with the baby and funeral. I, also, didn’t want to break the bag of water until the last minute because I had read it would shorten the life of the baby due to pressure on the exposed brain. The bag of water would act as a cushion to the head as it entered the birth canal. Anyway, it was all set. We would arrive in the morning and see what the Good Lord had in store for us.

Wednesday, February 16, 2005, my sister - Vickie, husband - Karl, and I entered the hospital and was admitted to a room. We waited for the ultrasound tech to come in and see what position the baby was in. I was praying for him to be heads down because I couldn’t imagine waiting another 2 weeks after I had psyched myself up for this day. I wasn’t sure how much more I could take. Little did I know?

As she completed the ultrasound, she said the baby was in position. I knew God had answered our prayers. He knew I couldn’t take much more and surely He said it is time. However, the tech said she measured the baby to be approximately 9 lbs. 2 ozs. This was a shocker because rarely did my doctor know of these babies being this large. However, my firstborn, Colby, was 9lbs. 1 oz., and we had a time getting him out.

By 9 a.m. they started with the cytotec. They didn’t hook up the heart monitor because they didn’t want me to be distracted by it in case his heart quit. The doctor said it is likely he would pass during the birthing process and he did not want me to loose focus. By afternoon, I was only 3 centimeters. They started with the pitocin and by night, I received my epidural. The two ladies from Organ Procurement came by and we signed papers to allow transfer of organs. They were very nice and seemed in awe of how Karl and I were handling the situation. By 3 a.m. Thursday, I had not dilated any more than 3 centimeters, so the doctor went home and most of my family did, too. I had not slept nor eaten since Tuesday afternoon and I was a wreck by Thursday at noon time. The doctor came in and said we need to make a decision. He said I could not continue like this because I was dehydrating, I was exhausted, and the baby was still not coming down. We either needed to break the water or have a cesarean. I told him to give me a couple more hours to think about it all. So he left me to ponder.

I knew if I allowed him to break the water it would be over for Gabriel. Yet for all I knew, he may have passed already. I knew he stayed crammed up under my ribs as if he didn’t want to come out; however, I hadn’t felt him move in quite some time. I wondered how he must feel if he could think, knowing this was the end for him. My poor baby was going to be taken from a warm, cozy place to be exposed to the cold outside world to die. I was scared to do the cesarean. I wanted to be with him every minute I could and I was afraid of how I would recover. So, I asked if we could all get in a circle and pray. My family and friends gathered around my bed and my brother, Jimmy, begin to pray. Then I spoke and asked God to please let me know what to do and to give me strength. It was one of the most touching and memorable times of my life to look around, see, and feel the love of everyone around me. I didn’t feel alone, just scared. As soon as it was over, I looked at Karl and told him if the baby was still alive then we are going to do the cesarean. I asked him was this okay and he told me whatever I wanted to do was okay. Poor Karl seemed so confused and willing to do whatever. Me, I just felt God had given me the answer of what to do next. So the doctor and nurse came in and I asked to hear the heartbeat. They asked if I was sure and I said yes. I decided if Gabriel was still alive after all this time, then I’d take the chance and have the operation. As we listened, I heard it again, that galloping sound of his little heart beating. I told Dr. H. I wanted to do the cesarean. Dr. H. was satisfied with my decision. He felt it was the right thing to do; however, he didn’t want to push me either way.

Gabriel John Newman, baby with anencephaly

The staff began to prep for surgery. Then at 2:30 p.m. on Thursday, February 17, 2005, Gabriel John Newman entered this world. He cried a loud cry which was music to my ears because I never thought he would have cried. From my research, most of these babies never cried. He looked just like his older brother Colby. My sister and my husband were by my side in the operating room. We all cried and breathed a sigh of relief. He was 7 lbs. 5 ozs. The whole staff was so good to me. I’ll never forget the look on the anesthesiologist face as he finished, he looked at me with tears in his eyes before turning away, and patting me on the shoulder, he said “May God be with you.” Gabriel seemed to be choking and I asked for them to suction him out and do whatever they would do for any other baby to keep him alive. I don’t think they were sure what to do because I think they thought he would pass very shortly. They handed him back to Karl and his color was better and he seemed content. With his little hat on you could hardly tell there was anything wrong. He was truly a miracle and perfect in so many ways.

They took us back to the room, and we asked to have a few minutes with him before we had family come in. We examined him and loved on him and cried for fear of when the end would come. We then asked the nurses to allow a few at a time come in to see him. Everyone was so happy to see him; yet, so sad of how it all would end.

Later on, they came and bathed him and we gave him a bottle. He sucked the bottle down. It was truly amazing. Most babies I read about didn’t suck bottles. He never opened his eyes and no crying did he make. He would flinch when someone touched him, especially when you changed his diapers.

After everyone left, Karl and I settled down for the night with Gabriel to ourselves. I was exhausted, so Karl took him and laid him on the cot beside him and told me he’d watch him for awhile. I tried to sleep but kept looking at the two of them lying there and wondering, what if he dies. Maybe, I shouldn’t go to sleep.

By the next day, Friday, they moved me to room 2713. Karl decided it was time to go home and see about Colby. We had planned not to bring him to the hospital to see Gabriel for fear of upsetting him. My sister, Vickie came to stay in place of Karl’s absence. She stayed with me Friday night. I had gotten up and had a shower. I was better but still exhausted. We had visitors in and out all day. By night, we were both exhausted. She and I lay down for the night and I cuddled Gabriel to my side in the bed with me and we slept on and off all night long. We had him wrapped in blankets to help keep him warm.

Saturday, we awoke and still had visitors in and out. It was amazing the people who prayed for us and came to visit us. The pediatric nurse practitioner came in, looked at him, and said Gabriel looked good. She said it was possible he could live for up to 8 months. We talked about the possibility of bringing him home the next day which was Sunday. As the day went on, I was ready to go home. Then Gabriel started struggling during his feedings. He had not consumed the amount of milk he should have so we had to resort to tube feedings. This was stressing me out. I was even more exhausted and things were beginning to wear on me. Inside, I was feeling like he might be trying to slip away and I was beginning to get sorely attached. I didn’t want to let go. I began to cry a lot. I felt myself melting away and I couldn’t pretend to be alright anymore.

By nightfall, his color was not good. His temperature was lower and we wrapped him in a third blanket. The nurse was trying to show me how to tube feed him and I was so scared of hurting him. One of his nurses, in particular, was wonderful. She looked at me and asked why I wouldn’t let him go to the nursery that night and get some rest because she could see I was exhausted. She said we could continue to practice his tube feedings the next day and I could wait until Monday to go home Monday. I told her that would be fine; however, I was unsure if I really was in agreement. My heart was being torn. I wanted Karl there with me and I wanted to see Colby. Karl said Colby was sick with a cold and he didn’t feel it was best for him to come. We had to stick to the plans especially if we were both going to be coming home anyway. So my sister, Vickie, opted to stay with me another night and thank God she did. Once again, my devoted and loving sister would be my rock to hold on to.

As the night went on, Gabriel started with small little seizures of turning purple. I didn’t understand. I thought maybe he was choking or not getting enough air, so I would raise his little head and soon it would pass, and he would be okay. The nurse came in about 10 p.m. to take him to the nursery. I told her we had to renegotiate. She could take him and do the tube feeding while I showered and got ready for bed, but she would have to bring him back. I wanted him in the bed with me. I couldn’t bare the thought of him dying without me holding him. About midnight, we settled down and decided to get some sleep. I was a wreck. I had cried all afternoon until my eyes were swollen. I nestled Gabriel beside me in the bed and drifted off to sleep. Then about 1 a.m. Sunday, he woke me having a seizure. Vickie called for the nurses and they came and checked him. The nurse said it was just a matter for time now. He was having seizures because his organs were beginning to shut down. Frantic, I got out of bed and began rocking him. Praying, crying, and asking God for his mercy in between every seizure, until he seemed to have the most terrible seizure of all. Vickie called for the nurse. A nurse came in and said his heart beat was very slow. She asked about him. So, I began telling her the story of how it all came to be. When I finished, he began with his last struggle for life. Then he laid there still in my arms. By this time, we were all in tears, my sister, the nurse, and me. The nurse checked him at about 5 a.m. Sunday, February 20, 2005, and Gabriel had gone home, not with me, but with our Lord in heaven.

Afterwards, we went through all the normal actions of grieving and burying our son. To me, life would never be the same. You just don’t forget about those you love. Gabriel was both a blessing and a miracle. His short time here on earth made a large impact on me and others. My father said he had lost a mother, father, and siblings, but nothing could compare to this. Holding your child until his last breath is one of the hardest things I have ever done in my life. I guess it is like my mother has always said, “It just doesn’t seem natural for your child to die before you (as a parent).” She was right.

My comfort is found in the word of God. I must believe, one day, we will all be reunited in His kingdom if we give ourselves to Him. Gabriel is there, I just have to make sure I get there along with the rest of my family.

Written by Gabriel John Newman’s mother,



Update: June 1st 2007, Sonya gave birth to a healthy son, Asa Levi.

 

Last updated 11 October 2007