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用中文 / In ChineseMichael & Jessica
Sharon and Mike’s twin sons, Brian and Marc (conceived after years of infertility) were born prematurely and died on March 6. They began infertility treatments again in May, and a little over a year later were pregnant again, after having decided that if that cycle didn’t work, they’d stop and pursue adoption. They learned that their new pregnancy was twins again, and declined selective reduction. A cerclage was done at 11 weeks (a delicate procedure because of Sharon’s two uteri and two cervixes) and she was on strict bedrest. At 16 weeks, they went for a routine ultrasound.
Mike and I were so happy and positive about this pregnancy. Suddenly, Dr. L. returned with a look of sadness on his face. He told us that one of the babies did not look right – maybe it was the machine or maybe the baby had something wrong. I’m an x-ray tech, so I knew that was just a comforting line. He arranged for us to have a formal ultrasound. I had requested that a particular radiologist, Dr. R., do the exam, he too had a look of hopelessness in his eyes. Finally, it was confirmed, one of our twins was anencephalic. The baby was perfect in every way, except her brain and the top of her skull were not fully developed. We were assured it was not our fault, nothing we did or did not do caused this to happen. It was just something that happened in the first 28 days of development. She would not live – if at all – for very long after birth.
Needless to say, we felt in our hearts that same crushing weight as we did when Brian and Marc died. I never thought I’d feel that intense pain again, but I did. It is a pain I carry with me each day. We decided to love this baby as much as we could for the remainder of her short life. She moved around so much and each kick I felt of hers was precious to me.
The other twin appeared healthy. We were told that the chance of him having a neural tube defect was now increased, but we were blessed, he appeared healthy on the ultrasound. A few doctors insisted that I have an amnio, just to be safe, but we chose not to. We felt the risk of preterm labor was not worth it for us. We already had too many factors against us. So we put our faith in God and our doctors.
At 18 weeks, I was put in the hospital on complete bedrest, I was only allowed to get out of bed to go to the bathroom. I laid in bed with my hips elevated, I even learned how to eat in this position. We were willing to do whatever was necessary to have our one twin born healthy. We learned our “healthy” baby was a boy-we named him Michael. Our “sick” baby was a girl, whom we named Jessica. Right before we learned of Jessica’s illness, I had a dream that we had a boy – Michael – he was small, but he survived and was healthy. In my dream, we also had a girl – Jessica – who died and disappeared into a field of flowers. Was God trying to gently prepare us for the future? I think of that dream often.
At 23-1/2 weeks, I went into preterm labor-practically the same time I did with Brian and Marc. I was given ritodrine by mouth and I had a bad reaction to it, plus the contractions were not being controlled. So off I went to Labor and Delivery, to the same room I was a year and a half earlier. I prayed I would not have the same nightmare as I did then. The doctor tried to stop the contractions with an IV-it did not work. Next came the terbutaline and finally the bolus of magnesium sulfate. When they say mag is hell drug, they mean it. I wouldn’t wish it on anyone. Mike held my hand and tried to be positive, but he too was frightened. Dr. L. stayed the whole night, worried about the fate of our twins. I had to have blood gases drawn because I was hyperventilating from fear, I also had to remain catheterized and have blood work every six hours. Finally, I was stabilized and while the contractions were still there, they were less intense.
Dr. L. tried to wean me off the IV mag, but each time he did, I would go full force into labor again. The contractions became so strong and so close together, that nothing was stopping them. The radiologist came up to the room to do an ultrasound and discovered that Jessica’s amniotic fluid had increased so greatly that Michael was now in serious danger.
The only alternatives seemed to be either to risk removing amniotic fluid daily (very risky) or to end Jessica’s life and remove her amniotic fluid completely. Because of her neural tube defect, she was producing an enormous amount of fluid, which was dangerous for all three of us. How could everyone talk like that, as if she did not matter? I did not want to end her life, no matter how inevitable her outcome was. We had no choice though. Our priest assured us it was the right thing to do – we would be saving Michael. Still we were very reluctant. Our hospital is a Catholic hospital which does not perform those kind of procedures. Dr. L. called all the hospitals in the 50-mile radius, to see who could take me. No one knew if any of us would even survive the trip. Luckily, Dr. L. talked to a specialist who suggested using indocin suppositories. Indocin had never been used at the hospitals in our area, to stop preterm labor. We were told that the major risk was either within the first 24 hours or else if used after 33 weeks, it could cause a patent ductus heart defect. It was worth a try – and after much activity, and much fear, it worked. I thank God that we did not have to end Jessica’s life – I do not think I could have lived with myself and I’m sure I would have felt resentment towards everyone involved.
After twelve days in the intensive care part of Labor and Delivery, I was finally sent back to my room. I was 25-1/2 weeks pregnant and saying so many novenas for my babies. I had biweekly ultrasounds done to check the amount of amniotic fluid, the condition of my cervix and also to check Michael’s growth. At one point, the perinatologist said that Michael was not developing correctly. Again we were devastated. He felt Michael’s body was too small in comparison to his head circumference. It was a long few days before we found out that Dr. K. was wrong. Michael’s heart was also checked, to make sure he did not have any ill effects from the indocin. He appeared okay in that respect.
As a way to deal with Jessica’s hopeless fate, Mike and I decided to donate her organs, which seemed to be developing well. We felt if she saved another baby, we would have a justification for her death. We lost that battle also, as the medical ethics committee at our hospital said no. They did say we could donate her corneas, though, but when we asked how to go about that, no one would give us any answers. So instead, Mike and I planned our daughter’s funeral and brought her a plot next to her twin brothers who had preceded her in death. People who came to see me never mentioned Jessica, it was as though she did not exist. Didn’t they realize she was as real to us as Michael was?
When I was 33 weeks, the indocin was stopped and I began to fill up with amniotic fluid once again. I could hardly breathe and I was in so much pain. I could barely feel my babies move, which alarmed everyone. I had a BBP on Monday and the resident interpreted it as normal. By Wednesday, January 9, I was in so much pain and I hadn’t felt any movement for quite some time. Dr. L. ordered another BBP and the same resident did it. Again he said I was normal. Then how come my babies hadn’t moved all day? Thank God, another resident walked in, looked at the screen and ran out of the room to get the perinatologist. He immediately called Dr. L. and an emergency c-section was ordered. I cried so hard – would Michael be okay? I was 33-1/2 weeks pregnant and the ultrasounds had shown he was a good size. I didn’t want to have my babies now. As soon as I delivered Jessica, her life would be over. It wasn’t fair and I was scared. Scared of how she would look. Scared of feeling my heartbreak. Scared of my daughter losing her life. Of course, we had no choice, Michael was in so much danger, the amniotic fluid was overtaking him. He wasn’t moving on the ultrasound screen and he wasn’t moving in me.
I was prepped for surgery, because of the size of my abdomen, the anesthesiologist had difficulty giving me the spinal. I had wanted a spinal, because I wanted to be awake when our long-awaited twins were born. No one knew for sure how long, if at all, Jessica would live and I wanted to be with her. The room was packed with doctors, nurses, and my sweet husband. Mike held my one hand and with my other hand I clutched the St. Jude Relic, the patron saint of hopeless cases, whom I had prayed to for many years.
In no time at all, I heard Michael Robert cry. It was and still is, the sweetest sound I’ve ever heard. I love his cry – it is a sound that proves to me he is alive. Luckily, he did not have to be intubated, he was only on oxygen for about a day. He weighed 4 lbs. 8 ozs and he was okay!!
Jessica Hazel was then delivered. My heart rate rose so high that my carotid artery had to be massaged to bring my heart rate back to normal. Jessica never cried, never took a breath. She did have a pulse for 2-1/2 minutes. Yes, it was heartbreaking. The nurses put a cap on her head and wrapped her in a blanket and Mike and I were able to see her. She was beautiful and looked perfectly normal. Then why did she die? Why did everyone tell us she’d look different? We admired her for a few minutes, then the nurses took her to clean her up.
Jessica was baptized by the nurses in the delivery room right after she died. Our priest came into the recovery room a little later and he officially baptized her as I held her. My parents were there with Mike and me and I did feel comforted as I held her. We wanted Michael to be baptized and were frightened we would lose him too. Our priest said he would if we really wanted him to, but he asked us to have faith that Michael would be okay. I think that helped me to keep faith and hope that Michael would make it to be baptized in the church.
The nurses took some pictures of Jessica, but they’re still not enough. I wish we had more. We held her and loved her-she was beautiful and tiny-she weighed 2 lbs. and 6 ozs.
Soon the room was empty, Mike had gone to check on Michael in NICU and the nurse was charting. There was only my daughter and I. She laid peacefully in the incubator and I was comforted knowing we were together. The nurse gave me some morphine for pain – I did not want it. I’ll never forgive them for giving me that. While I drifted in and out of sleep, the funeral home man came for my sweet Jessica. When I awoke – she was gone! Didn’t they know, I could handle physical pain, it’s the emotional pain that is unbearable! Why did I sleep and lose that valuable time with Jessica?
I was released five days later, again empty-handed. Michael had a few minor complications and that frightened us. We had the funeral for Jessica on Monday, January 14. It was a quick service, too quick. We watched as her coffin was lowered into the ground and still it seemed like a bad dream. We still had a baby in NICU who needed to be watched over and loved.
Michael stayed in the hospital for 22 days; he was lucky, he had very few complications. He came home on an apnea monitor on January 30. In a way, it was better that he did have to stay in the hospital, since I had alot of recuperating to do, from the c-section and 22-1/2 weeks of bedrest.
Today you’d never guess that when we brought Michael home, he weighed less than 5 lbs. His only real problem is a heart murmur, which is a blessing considering what could have been. He’s very active and adds so much joy and laughter to our lives. He is our reason for living. Michael is definitely living proof that miracles do happen!
At first, I was afraid to love Michael, a child full of life, for fear of losing him. For so long, I felt as though I only knew how to love dead children and I was frightened that Michael, too, would die. Through Michael, I now realize that I love all our children. He is a little bit of Brian, Marc, and Jessica. As our love for Michael intensifies with each day, so does our love for our other three children. I can’t imagine life without Michael, for he is the meaning of our love.
Sharon
Interview…
1. Your name and some details about your twin or higher multiple baby/s who died, and other children (if any, living or previous losses) . . . Sharon . After years of infertility treatments…Brian John and Marc Simon were born March 6 and died March 7. They were premature and died of severe RDS. Brian lived 10 hours and Marc lived 12 hours. Michael Robert and Jessica Hazel were born (also after infertility treatments) on January 9 after 22+ weeks of bed rest, 18 weeks were hospitalized. Jessica lived only 2 minutes, she died of anencephaly. We learned of her fatal birth defect September 11. Michael is a thriving 5th grader who is our joy. Monica Jude was born after no infertility treatments. She is our surprise blessing – our chance to experience a child without any heartache. She was born November 6 7 years later and she idolizes her older brother.
2. When I remember my baby/s, I . . . smile. I realize I am very blessed to have Brian, Marc, and Jessica in my life. They have helped to make me who I am today.
3. The worst part is . . . the emptiness I feel in my heart.
4. I have coped with anger by . . . allowing myself to go through the entire grieving process which includes anger. I am no longer angry.
5. I still have problems with . . . significant dates, such as Brian and Marc’s birthday and anniversary of their deaths. Jessica’s birthday, my due dates and the date that we found out Jessica had a fatal birth defect.
6. I have learned that . . . by reaching out to other grieving parents I continue to heal.
7. I no longer think that . . . I have to hold newborn babies. It is difficult for me, so I no longer hold friend’s and family’s newborns unless I am sure I can at that particular moment.
8. I remember when . . . I held each child of ours in my arms.
9. My partner (if any) and I feel close when . . . we reminisce about our pregnancies and the short time we had had with Brian, Marc and Jessica.
10. The best times to remember my baby/s are . . . every moment of every day. I always welcome the memories I have of Brian, Marc and Jessica.
11. The worst times to remember my baby/s are . . . when I am feeling melancholy about life in general.
12. Sometimes I wish . . . I could relive each moment of Brian, Marc and Jessica’s short lives – from conception to their deaths.
13. When I could handle it again, I did . . . smile and laugh and enjoy life!
14. If I could choose whether or not to have twins again (or triplets or more etc. again). . . I would. Having had two sets of twins and a single pregnancy, I realize that each pregnancy comes with its own risks. Each child is a gift and to have a healthy child is a real blessing. It was comforting to me to know that Brian and Marc were and always will be together – from conception on. It also comforts me to know that Jessica had her twin Michael in utero. She was not alone either. I always liked knowing that each child had someone to “play with”.
Sharon