Early Infant Death | Real Life Stories
Sometimes in this world things happen and there are no answers to the question "why?" I know because I began looking for that answer in 1988 when our daughter Haley was stillborn.
Her death was totally unexpected. Her movement stopped and an ultrasound confirmed our biggest fear. Our baby had died in utero. After twelve and a half hours of difficult labor our baby was delivered. She looked perfect and beautiful, like a little angel. My husband named her Haley, taken from an angel's halo. Our doctors and nurses were gentle and sensitive. They gave us privacy to hold our daughter and begin to make plans. Because she was delivered late in the night, none of our family was able to see or hold her. Then we went home with empty arms and heavy hearts. We buried our daughter in a special part of a cemetery set aside just for infants. Her marker says "In Jesus’ Arms," which is how we feel. She went from our arms to our Savior's arms.
I thought I could not live to see another day. I felt an indescribable loneliness and hurt. The hardest part was trying to understand why God allowed this to happen.
The autopsy found no cause of death and our doctors encouraged us, so I became pregnant again almost right away. Looking back I think it helped me deal with the loss of our first child, but I also became very fearful. I visited Haley's grave each week; then as I got further along in this second pregnancy, my visits became less frequent. I was afraid to face death, and I thought if I didn't go to the cemetery, death would seem less real.
From the time I found out I was pregnant the second time, everyone I knew, and many people I didn't know, were praying for us and this unborn child. Through the death of our daughter we discovered that my blood and my husband's blood were incompatible. Although the autopsy report did not say this was the cause of our daughter's death, the doctors then knew how to treat this second pregnancy. My husband and I began weekly trips to Chapel Hill, N.C., to see a specialist. Through a procedure called fetal blood sampling, whereby a needle passes through the mother's stomach and amniotic sac and into the umbilical cord to withdraw a sampling of the baby's blood, it was discovered that my blood and the baby's blood were different. My blood was unable to give the baby proper nourishment and therefore was causing the baby to become anemic.
Dr. John Seed at Chapel Hill treated this condition with bi monthly in utero blood transfusions - blood compatible with the baby's was slowly passed into the umbilical cord. Each transfusion would supply the baby with enough nourishment until the next transfusion. I dreaded our trips to Chapel Hill because the procedure was very painful and also put the baby at risk. But each visit brought us closer to the time our baby would be born.
I was so afraid to hope for the future, but I honestly thought that God was working a miracle in our lives and for our baby. I felt God was trying to teach us something through the death of Haley and whatever the lesson was, I would learn it without having to suffer another loss. In my mind I justified Haley's death because through it the doctors learned how to treat our next baby. We were praying so hard, as were our friends and family. I felt sure we would get to bring this second baby home. An ultrasound revealed our baby was a boy, so we named him Garrett Ezekiel, which means "our brave warrior whom the Lord strengthens." As we watched him fight for his life every day, the name seemed to fit our son perfectly.
During our last transfusion, our baby's heart rate dropped. Though I could not see what was going on, I instinctively knew something was wrong. My husband, who stayed by my head, held my hand, and talked to me throughout each operation, told me one of the doctors had left the room. Then I knew something was terribly wrong. Dr. Seed told me that in order to try to save our baby, they would have to do an emergency C-section. Within seconds the operating room was filled with doctors and nurses. My husband was pushed out of the operating room and a nurse began hooking me up to all sorts of machines. I was so afraid. I remember telling the nurse, "Please don't let my baby die!" Within six minutes our son, Garrett Ezekiel, was born. The doctors were able to stabilize him and move him to the neonatal intensive care unit. As soon as I came out of recovery, the nurses took my husband and me into the ICU to see our son for the first time. He was under warm lights and had tubes running in and out of him. But as I looked at his tiny, helpless body I was filled with such love and peace. He was such a miracle. The nurses carefully laid him in my arms. He was so beautiful absolutely perfect. I don't know how long I held him, but I have every detail etched in my mind. The doctors told us he was a very sick little boy, but they would do everything they could to help him.
I was taken to my room where I began to doze due to the anesthesia. I awoke with a start when the neonatal doctor came into my room. He didn't have to say a word; we knew that Garrett had died. Our beautiful little boy, for whom we had fought so hard, lived four short hours before joining his sister in heaven. Another part of me died that day, too.
Not long after the doctor told us our son had died, the nurse brought Garrett into the room, and we held him for a long time. My brother and his wife, who live in Chapel Hill, came. They held Garrett and held us as we cried over our second loss. Why? Why did the Lord find it necessary to allow our second child to die? I struggled to find an answer.
Because no one else in our family had seen our daughter, it was extremely important to me that my mom and dad see their grandson. Early the next morning my parents and our ten-year-old son, Ricky (my husband's natural son, whom I had adopted), came to the hospital. The social worker at the hospital brought Garrett back to us. His little body was cold, but he still looked so pretty and sweet. It was important to us for our family to see Garrett; I think Ricky needed to be a part of this to help him understand that he had a brother. Not having seen Haley, it was easy to pretend she never existed. But both Haley and Garrett were real; they were members of our family, and I wanted everyone to remember them.
I stayed in the hospital in Chapel Hill for five days. During this time the nurses and doctors were wonderful. They cried with us, they helped us make arrangements to take Garrett back to Charlotte, and they listened. They gave us the support we needed to get us through those first awful days.
Garrett was buried near his sister. Those who had prayed for him attended the graveside service. Then I went home to recuperate from the surgery and begin healing emotionally. It wasn't easy. Physically, I felt better in a few weeks, but emotionally and spiritually, I was empty. The pieces did not fit together to make sense out of the past year.
Did any of my questions have answers? Some did, but most did not. I knew my children were in heaven and that given a choice, they wouldn't come back to live on this earth. I knew that one day I would be reunited with my children in heaven. Yet I wanted them here and now, and I just plain hurt. My heart was broken and I felt an endless emptiness. Without my family, friends, and a God who promised to take care of me, I know I could never have made it through those long days, weeks, and months.
Through these experiences I have learned a lot about life, death, and myself. Life is so precious and each child is a miracle. I have learned that no matter what a person has been through before, he/she cannot be prepared to lose a loved one. Yet the Lord promises to be with us, and He strengthened me and upheld me during the many times I felt alone and lonely.
Do I still have questions? Everyday. There will never be a good enough answer to why both of my children died. No one on this earth can answer these questions. Only God can, and I know He'll answer them when I meet Him face to face.
I still miss my children, and I think of them every day. Nothing will ever take away the pain of losing them; besides, I don't think I want it to. The pain brings memories of my daughter and my son, and that's all I have of them. I want to remember their movement within my womb and their tiny faces when I first laid eyes on them. Recalling these things, reminds me of how precious and perfect we are in God's sight.
For My Precious Children
I wondered who you'd look like
Maybe me, perhaps Dad;
I wondered what your future held,
A future you never had.
I never looked into your eyes
Or held your tiny hand;
Now you play on streets of gold
In God's heavenly land.
Why you're no longer here
I just can't understand,
But I know I'll recognize you
In God's heavenly land.
I'll know your precious voice,
I'll hug you, oh, so near;
My heart will be complete again -
I'll thank God He brought you here.
God kept us close to Him and continued to give us a strong desire for another child. Our doctors advised us not to try again because we would face the same problems. So we began to look into adoption.
Through our minister we were made aware of a young woman who was seeking adoptive parents for her unborn child. We prayerfully submitted a profile of our family and waited. On June 5, 1990, we received a phone call from our minister.
The woman wanted us to have her baby. She said she wanted to help ease our pain with the loss of our two babies by giving us her child. Her due date was seven days away. We began to prepare the nursery for the third time. We were excited, scared, and filled with anticipation. There was always the chance that the woman would change her mind even up to ninety days after the birth of the baby. Deciding to put these fears behind us, we placed our trust in God and waited for the baby's birth. On June 9, 1990, our son, Addison Robert, was born. When the young woman was in labor, we were called to the hospital. We saw Addison when he was ten minutes old and was being weighed and measured. I could not have been more joyful and thankful than when I held him for the first time. We were so grateful to this birth mother and conveyed our thanks through her counselor, since we did not meet her. What a special woman she is. We continue to thank God for her daily. No one could have given us a gift greater than the gift of this child.
We brought Addison home when he was two days old. Those first weeks were a blur. I still couldn't believe this tiny child was mine. He felt so good in my arms, and I began to feel the rawness of my pain start to mellow. The nursery was no longer a sad room, but my favorite room in the house. It was filled with love and life.
As I watch Addison grow and develop each day, I marvel at what a miracle he is. What a blessing he is to every member of my family. He makes me realize each day how much God loves us to have sent us this little miracle.
Yes, God is faithful and He answers our prayers, although not always the way we think He will. Looking back, I can see God's hand in every detail surrounding the deaths of Haley and Garrett and the adoption of Addison. He has given me strength and peace. He has led me to new friends and made me more sensitive to the needs of others. Because of Haley and Garrett I look forward to the second coming of Christ with greater anticipation. I have two very special little children waiting for me. When that day comes, I know I will feel whole again.
Those who are hurting every day.
by Jill Thigpen
Keep me strong, help me to stand
Support me with your loving hand
Hold me tight, oh Lord, I pray
Guide me through another day.
Heal my heart and wipe my tears
Take away my pain and fears
Give me peace, oh Lord, I pray
Guide me through another day.
Show me how to share a smile
Push me to go the extra mile
Let me love, oh Lord, I pray
God’s Love, Mercy, and Grace
By Jennifer McConnell
For as long as I can remember my desire was to be a wife and a mother. I did not go to college for a degree, but for a husband so I could become a mother. Of course the first year my dreams were dashed time and time again, but it was through this heartbreak that the Lord revealed Himself to me.
I had grown up going to church every Sunday. I even prayed a prayer and was baptized, but there was no life change. It wasn’t until my second year of college that God changed my heart. He showed me that I was living for the world and not for Him. I submitted my life totally to Him and at that time I became a Christian.
Shortly after that He blessed me with my husband, Patrick. We both wanted children right away, and I definitely was ready to be a mom. I had endometriosis so we knew it may take a while to get pregnant. We tried for a year and a half, and I was starting to get very discouraged. Didn’t God want me to be a mom?
Then it happened. I was late. Could this be it? We were overseas in the military so I went in for a blood test, and you had to call the next day with a number to get the results. When I called, the nurse said it was positive. Are you sure? I couldn’t believe it. I immediately started having cravings and walking around with a water bottle. All the things that I had heard and seen other pregnant women do. I was so excited that I was telling everyone even though “they” tell you to wait 3 months “to make sure”.
It was a Tuesday that I found out I was pregnant. Friday night I started bleeding. Okay, I had read that this could be normal. I called the hospital. They said we needed to come to the ER because OBGYN was closed for the weekend. They asked me a lot of questions and then put me in a room to wait. They did blood work and examined me. They seemed hopeful because the numbers were good. They sent me home on bed rest and told me to come back if I had more pain or passed tissue.
I didn’t understand what all of that meant but to me I heard that everything was fine. My husband and I rented movies and bought a pizza and went home to rest. I went to bed that night feeling fine but woke up with a backache. I decided to go take a warm bath to relax. When I got out I realized I was bleeding more, and it looked more like tissue. I woke my husband, and we went back to the hospital. They examined the tissue and did more blood work to confirm that I was losing my baby.
I felt so lost and alone. Why did this happen? What did I do wrong? Nobody seemed to know what to say or how to comfort me. Someone told me if I had prayed hard enough or wanted the baby badly enough I wouldn’t have lost the baby. After I miscarried, people would say it’s for the best, or there was probably something wrong with it. My poor husband didn’t know how to console me so he busied himself with work.
However, when I was the most alone God was faithful, and He consoled me and He strengthened me. I was a young, immature believer. I clung to Philippians. 4:4-9 especially verse 7. He guarded my heart, and He helped to heal me. He strengthened my marriage by showing my husband what I was feeling. He showed us how to communicate and to become stronger. He also brought us to a strong Bible teaching church in Spokane, WA.
Two years later, I became pregnant again, and all of the fears resurfaced. God sustained me though and gave me total dependence on Him. It was a rough pregnancy, and I went on bed rest at 31 weeks because of pre-term labor. Emma Ruth was born at 38 weeks healthy and beautiful. We felt so blessed and so thankful. She was a wonderful testimony of answered prayers. Her sister, Makayla Grace, arrived just 14 months later. Again I went on bed rest at 21 weeks, but she also was born healthy and beautiful.
Patrick and I truly felt blessed. We wanted a big family, but with the hard pregnancies we weren’t sure about another pregnancy. We prayed to seek God’s will in this decision. We were starting to lean towards adoption, but I became pregnant. We were surprised but oh so pleased.
I was under very strict doctor supervision, so my ultrasounds started early. I received one at 11 weeks right before Christmas 2001. We were going to Georgia for the holidays, and the day before we were to leave, we got a phone call from my doctor. She wanted us to meet with a genetic counselor because they saw something in the ultrasound. There was fluid behind the baby’s neck, which could be a sign of Down’s syndrome. We didn’t want to do any further tests to confirm or deny because it would put the baby at risk, and we saw this baby as a gift from God no matter what he/she was born with.
I had several more ultrasounds to monitor my pre-term labor, and they kept coming back with something whether it was fluid around the heart or a little build-up in the brain but nothing conclusive. We just kept trusting the Lord.
I ended up on bed rest again at 18 weeks this time. I was hospitalized on my 7th wedding anniversary with a partial placenta abruption at 26 weeks. The bleeding stopped but the risk was still there so they kept me in the hospital. It was a great time for me just to meditate on God’s Word and one of the verses was Ps. 34:4, “I sought the Lord, and He heard me, and delivered me from all my fears.” On April 12th at 29 weeks the baby’s heart rate dropped and that verse was tested. I needed an emergency C-section, and as they wheeled me into the room, I prayed that verse and God gave me a peace that only He could give. Abigail Shea was born that day weighing 3lb 4oz and 151/4in long. I briefly saw her before they rushed her to the NICU.
Abby truly seemed to be our miracle baby. She survived the critical 48 hours after birth, and she didn’t seem to have any of the problems they thought she was going to be born with. She just needed to grow and get bigger and stronger.
For the next 2 months in the hospital, Abby seemed to be the typical preemie. It was so hard not having her home with us and only getting to see her and hold her at the appropriate times. I was trying to nurse her, but she just wasn’t getting it. The nurses kept telling me it was normal. However, after awhile they were starting to question the normal.
Abby, was starting to concern the doctors, but they couldn’t place what it was. She hardly ever cried, she didn’t eat well by mouth because she would choke, and she was extremely puffy and swollen. They did genetic tests that came back with a trans located chromosome, but when they tested Patrick and me, I had the same thing so since I was normal they ruled it out.
After 3 months in the hospital we had an option of taking Abby home, but it would have to be on a feeding tube. Of course we wanted her home so she had the feeding tube put in and after 96 days in the NICU Abby came home.
Abby had a list of doctors and therapists to see to try and figure out what was wrong with her. She went back in the hospital after being out for one month with a high fever caused by a urinary trace infection. She continued to have the recurrent infections along with asthma, scoliosis, edema, lazy eye, hearing problems, stiff joints- you name it she seemed to have it.
When she was 6 months old, the genetic doctor decided to test her for a metabolic disease. She made it sound low key, but when I went home to research it I found that rarely do kids live past 10 years old. My husband and I prayed. We said okay Lord you are in control. What do you want us to learn from this? How do we handle this?
The test came back 2 months later right before Christmas of 2002. She had a type of disease called oligosaccharidosis and the doctor thought the type she had was gangliosidosis. We went for counseling of this disease, and I remember hearing Patrick ask what the life expectancy is. The doctor said 2 years. I couldn’t breathe. She just said my baby was going to die soon. We went home numb.
That night I could not sleep. I kept jumping up with every noise Abby made. I was terrified I would go to sleep and wake up, and she would be gone. The next day someone from our church kept the 2 other girls so Patrick and I could spend time together. We read and prayed and cried and talked. God was giving us peace, helping us for that day and the days to come. That night I clung to Proverbs 3:5-6 saying it over and over. A friend of mine had lost her baby 3 years earlier, and I had heard her say she would say verses over and over again until she believed them in her heart. It worked for me and for the first time in 5 months Abby and I slept the whole night. He gave me a peace only He could give.
We had some hard decisions to make regarding Abby’s life. There was no cure and no treatment for this rare disease. Her pediatrician, bless his heart, called us in to talk to us about the options and to give us a Do Not Resuscitate order to have at home. We had to decide what measures we would take to keep Abby alive.
Christmas was a blur. My parents and my grandmother were there from Georgia, and it was hard seeing them try to be strong for us when they were hurting also.
January 2003 Abby got pneumonia. She responded well to the antibiotics and recovered quickly. We had had a skin graft done at Christmas to find the specific type of disease she had. It came back that she had galactosialidosis, only 20 cases ever reported in the world. She was missing 2 enzymes instead of one, life expectancy average 7 months. She was 9 months old.
February 3, 2003 Abby woke up from her nap with a high fever. She was put in the hospital. She was struggling so much to breath and the antibiotics weren’t working. We almost lost her Feb. 6th. We called the grandparents, and they hopped on a plane immediately. I was not ready to say goodbye to my little girl. I begged God, not now. He answered my prayer for that night. The grandparents got there, and Patrick’s dad held her for the first time. Over the weekend friends from church came to see her and pray with us. I saw my little girl continue to struggle, and God gave me a peace only He can give. I was ready to say goodbye.
Monday night Feb. 10th I was able to sleep only with a promise they would wake me. They woke me at 3am, and I was calm only by God’s grace and faithfulness. Her O2 lever had dropped to 50s with 100% oxygen. We called the grand parents and my dear friends. I held my little girl and rocked her and told her I loved her and kissed her goodbye. At 4:21am Abigail Shea McConnell went to be with the Lord.
As I left the hospital with empty arms, I felt numb and so empty. I remember thinking it shouldn’t hurt this much but hurt it did. However, even in the hurt we were able to see God’s love and His grace and mercy in Abby’s death. He had prepared us in so many ways. He showed us so many lives that Abby had touched while she was alive. He gave us 8 months with our daughter of not knowing and 2 months to help prepare us. He allowed the grandparents to get there in time. He answered my prayer of Abby being surrounded with people who loved her before she died. He protected her from the pain she would have had with this disease if she had lived longer. He also answered my prayer that she would know us before she died. The whole week she had been out of it with the high fever but before she died she looked up at me with those beautiful eyes, and I knew she knew it was me.
God’s grace and love surrounded us in so many ways. His protection and healing started so many years ago with my miscarriage. I was so full of anger and “why” question’s after my miscarriage. From that time God strengthened me and showed me His character. He taught me how to hold onto His Word as truth. God is good (Psalm 119:68). He strengthens my heart (Psalm 27:13-14, Ps. 28:7). He forgives, heals, redeems, satisfies, is merciful and gracious (Psalm 103).
Some days are harder than other days but on those really hard days God has given me such an urgency to be in His Word and be before Him in prayer. There are some days that the only comfort I have is knowing my two little ones are up in heaven waiting for me. This can only come from knowing Jesus Christ and the hope that we have to spend all eternity in heaven.
“Wait little Abby and little Joshua. Mommy will see you soon.”
Through the Lord’s mercies, we are not consumed
Because His compassions fail not
They are new every morning
Great is Your faithfulness.
Update: Patrick and Jennifer are living in Spokane, WA, where Patrick is a Junior High Pastor at Faith Bible Church. Emma Ruth is 4 years old now, and Makayla is 3 years old. They continue to heal from their loss trusting God to sustain them in all they do.
Tips for Grieving Hearts:
• Write down three things a day you are thankful for
• Cry freely - it is emotional release
• Exercise at least three times a week
• Send a card to someone else who is hurting
• Take time for rest and relaxation.
• Take a long walk in the sunshine.
• Read some helpful books. (any from our recommended reading list)