Loss, Fear, and Grief

This is a long post with emotional content. Forewarned.

INTRODUCTION
Losing a child is devastating. I doubt that anyone would argue with that, even one who has not experienced it first hand. There is a blog posted by the parents of a tiny and beautiful child, Millie, who is losing a battle with brain tumors. My friend, Caroline, and I have both followed the story for a while, and I commented on her blog that I remember how difficult is was for me to face the day to day pain with a child who might not live. She suggested that I write about that. What she probably doesn’t realize is that I’ve already done so in my autobiography. So I’m editing it a bit for the sake of length, and what follows is my account of that time.

PREFACE
First, I need to give you a bit of the history prior to her birth. My son was born in 1964 with no unusual events save for the fact that he was jaundiced for a while. This wasn’t unexpected. My blood has an rh negative factor. His father has positive rh factor in his blood. If babies I conceived had positive rh factors, my body would perceive the baby as a “foreign body,” and would then begin to increase antibodies to overpower the “foreign body” and kill it. With each child conceived, this problem arises earlier in the pregnancy because my system was sensitized, until eventually the baby will be too small, too undeveloped to live. It was thought that this rh incompatibility was a problem only in the latter part of the pregnancy, so no one was concerned about early, 1st trimester miscarriages, or as they are medically dubbed, spontaneous abortions.

At that time there wasn’t too much which could be done for children who were effected by this. Scott was placed under strong lights to help his body dissipate the jaundice. Jaundice is caused by the body trying to get rid of millions dead blood cells, in this case, the cells that my own blood system had attacked. Fortunately, in a few days, he looked as normal as any newborn baby.

When Scott was just over two, we decided to have another child. I conceived in a few months. When it was confirmed at around 2 months, we celebrated and told everyone we knew. Scott was delighted at the prospect of a baby brother or sister. Then just a few days later, I miscarried. I was crushed, as was my husband. Scott, being about 2-1/2 didn’t completely understand but knew there wasn’t a baby any more.

The doctor and many others said things such as, “You’re young. You’ll have more children,” or “It wasn’t meant to be, I guess.” I think no one really understood the emotional impact of losing an unborn child. People even said, “It’s not as bad as giving birth and then losing it.” Excuse me? What a thoughtless comment. A baby at any time is a baby, and I loved that child.

A few months later, I was again pregnant. We didn’t tell everyone this time. Just a couple close friends and our parents. Again, I miscarried. This was to be repeated three more times. I lost 5 babies, all in the first trimester, and there a couple other times that were possible but very early and unconfirmed. I even ceased going to the doctor because it seemed fruitless. They couldn’t do anything.

Then I happened upon a doctor who specialized in infertility and problem pregnancies. He was livid that I’d been allowed to go through so much physical and emotional stress. He vowed there wouldn’t be another. The rh factor was still believed to not be problematic until the later months. We know now that EVERY pregnancy triggers the system of the mother, causing antibodies to build so that every pregnancy increases the risk for the next. My body was essentially a killing machine for the babies I conceived. We just didn’t know it.

Within a few weeks I was again pregnant. Dr. G had hoped to run some tests prior to that, but despite precautions, it was too late for testing. I began taking hormones to help me get past that deadly first trimester. And I did!! We were all thrilled, including the marvelous Dr. G.

Throughout the pregnancy, my blood was analyzed very frequently to monitor whether the titer was elevating, a sign that my body was preparing to reject the baby. It went well past the 7th month, then in one week it shot up so fast that Dr. G said we had to induce labor and get the baby out, now. She was due near my birthday in April. This was a month before the due date. In today’s medical world, a month early isn’t overly concerning, but at that time, technology for a premie was iffy.

THE STORY
Our little girl, Terri Lynne, was born just minutes after 6:00 am on March 11, 1970. Dr. G checked her out quickly because the pediatrician, Dr. T, hadn’t yet arrived and he wanted to be sure that she was not in distress. He came back and said that she appeared to be all right. Quite small, and a little jaundiced, but didn’t show signs of acute distress. All her fingers and toes were in the right place, and he thought she was a beautiful baby.

She had a strawberry birthmark on her left shin. It was fairly light in color and intensity, about the size of two half-dollar coins laid end to end, but of course on that tiny leg it covered the majority of the skin from below the knee to above the ankle. The doctors said they did not feel that it would require surgical removal, that it would dissipate on its own over time. They were right. It was gone before a year, although to this day, there is a slight hint of a scar on TL’s left shin. It isn’t something you’ll notice right off, but those of us who know can see it if we look closely.

Terri Lynne, or TL, as we would often call her, weighed 4 pounds and 12 ounces, and was 18 inches long. She had lots of dark hair, but not nearly the amount that her big brother did at birth. While the nurses cleaned and weighed her and waited for the pediatrician to check her out, Dr. G and I talked while he finished stitching me up. I asked about having more babies, and he said he thought that we might be able to have one more, but after that it would be too risky, because the Rh problems show up earlier with each pregnancy. This pleased me. I wanted to have four or five babies, but three was all right.

Once he finished with me Dr. G. had me taken to my room and he went to get some more rest. [note; he had delivered 6 babies in the 24 hours preceding my delivery.] Another of his patients had been admitted, so he was staying at the hospital. The pediatrician was checking out TL and my husband had gone home to sleep. I was resting, happy as a lark to have my little girl safe and sound and ready to go home in a few days to complete our little family. I was relaxed and almost dozing. As I was napping, happily, I was thinking of being able to hold my baby soon once the examination of her was complete. Ah, this was nice. Life was so good.

Around 8:00 the pediatrician came in to my room. He said he wanted to talk about the baby and how she was doing. He began to tell me that she seemed to be healthy in many ways. She was well developed, except for her lungs, and this is fairly common with premature babies. It is called Hyaline Membrane, and he briefly explained it. Also, her blood was affected by the attack of my blood on her system, and she would need a blood exchange. He explained the procedure. It is done literally a drop at a time, a drop of old blood out, and a drop of new blood in. It is a risky procedure and takes a long time because it has to go so slowly. Then he added that her size was very small and this complicated the whole picture.

While he was saying all this, I began to be sucked into an abyss of roaring, swirling facts that I heard, but didn’t understand much about. He kept asking did I understand? I would nod or mutter, “Yes,” but in truth I couldn’t absorb it all. I think I was afraid to hear it, so I just cut it off and it tumbled around in my head and then back out again.

Finally he said that she was being placed on the critical list until this procedure was over and her lungs improved. And then he asked the biggest question of all. He said, “What is your religious affiliation?” I responded that we were Methodists. He nodded, and asked again if I had questions. I said no.

After he left the room, I continued to fight through the information he had just related to me and while I couldn’t make sense of much of it, three things struck me at once … he had said “critical list;” when he asked about religion, he was checking to see if we wanted her baptized and given rites; and Hyaline Membrane was what had claimed the life of the [President John and Jackie] Kennedy baby a few years earlier.

With a jolt, I burst into hysterical tears and wailing. The nurses came running into the room and tried to console me, but I was beyond immediate help. I asked them what it all meant, and they were not able or not willing to go into it with me without a doctor. They couldn’t find the pediatrician, but they did find Dr. G., who immediately ordered a tranquilizer for me.

God love him, he came to my room and sat with me, holding my hand until I was calmer. and ever so gently and clearly explained all this information to me again.

The blood exchange procedure I understood. I had already been briefed on that as a possibility that we might encounter. I knew it was serious, but it was almost expected.

The Hyaline Membrane was a different story, however. Although I knew the name and that it could be extremely serious, was a blur to me. You don’t always try to understand things that don’t apply directly to you. Until now it didn’t.

Dr. G explained that the membrane around the lungs of the baby while in utero usually dissolves during the final weeks of pregnancy. However, with a preemie, sometimes it hasn’t had time to do so, and the lungs can’t fully expand. He described it as trying to blow up a balloon inside a nylon stocking; it will expand, but not completely because the membrane/stocking is not as pliable. Usually it resolves itself if the baby can survive the first 48 or so hours. The trick is just keeping the baby alive while it does so.

Her size, while it doesn’t sound terribly small these days, was a big factor. At that time, it was pretty small for a baby with no other complications, let alone one with all my little girl had standing in her way.

At this point I realized that I had to get hold of her daddy. Dr. G dialed the phone, but there was no answer. As I said earlier, he was a very sound sleeper anyway, and then add the exhaustion he must have felt, and after 20 or 30 rings, I knew he wasn’t going to hear the phone.

So then we called my sister-in-law. I explained to her as best I could and asked if she would go over and wake him up. She said of course she would. I guess it was funny to have watched this as SIL timidly unlocked the door and went into the house, calling his name without a response. Even when she got into the bedroom, it didn’t wake him. I think she finally had to shake him and she said his face was totally stunned when he looked up and saw her standing there!

This had to have been a funny scene … SIL was totally uncomfortable going into our bedroom to wake him up, and she was the last person he expected to find standing there looking at him. I can’t imagine which of them was the most uncomfortable at that moment!

Dr. G. stayed with me until my husband could get dressed and back to the hospital. Then he explained it all again. He made some good assurances about the skill of our pediatrician, and said that he would be at the hospital most of the day if we needed him. Then the two of us were alone to cope with this devastating news.

He went to the nursery to see TL. I couldn’t go because I had a spinal during the birth and had to remain flat on my back for 12 hours. When he came back, he tried to be upbeat, but I could see that he was worried. He said she was hooked up to all kinds of tubes in an isolet. And she was so tiny.

That evening, I was able to get into a wheel chair and go to the nursery before they started the blood exchange. I could barely see her. Her isolet was in the intensive care unit and while it wasn’t a big room, it was against the back wall, probably 8 or 10 feet away. There was a pane of glass, the glass wall of the isolet, and all those tubes between us. And she was small. So small. But she was also wiggling like a little fish! Already, the nurses told us, she was scooting herself all over the isolet, a good sign!

Minutes later the blood exchange was begun. It took something close to an hour, but went well. My father-in-law had donated blood over the years and had amassed something like 80 pints, so he sent some of that credit to pay for the blood that would be used in the replacement. Dr. T had checked my blood type, B-, and made TL’s blood B+ so it would be easy for us to remember.

During the next few days, Terri Lynne’s weight dropped, as is normal for babies. And she was too undeveloped to have oral feedings just yet, so the IV feedings didn’t do much to help her maintain what weight she had. She finally stopped loosing at 4 pounds and 5-1/2 ounces. This was a scary time for us, because every quarter ounce was precious.

After a couple days, her lungs did, indeed, get stronger and she began to breathe on her own without the tubes into her lungs. This, too, was a good sign!

And she continued to kick her little feet and wave her arms until she traveled all over the little world that was hers inside the isolet. There was one nurse assigned to her around the clock in NICU, and she was very encouraging to us with her stories about TL’s accomplishments. She told us that girl babies tend to be stronger fighters, and this baby was definitely a fighter. She would make it.

I was allowed to go home. That was possibly the hardest thing I ever had to do. I needed to he home with Scotty, but leaving TL behind tore my heart out. I went to the hospital three to five times every day and stood outside those cruel glass barriers to watch my little girl fight her battle on her own. The pediatrician was very strict about no outside contact because any small germ could be more than her little body could fight off. So I stood. And I stood. And I cried.

During the ensuing weeks, I was at the hospital 3 to 6 times every day. I couldn’t hold my baby, but I was there. Scott stayed with Sandy while I went to the hospital many times, but others he went with me and played with the volunteer ladies in the children’s room in the lobby. This is before the days of allowing siblings to visit the new babies, so he waited. And he waited.

On the fifth day, Dr. T called early in the morning. He said that Terri ‘s blood had begun to “go bad” again, and another blood exchange would be done in a few minutes. What a shock to us! Everything had seemed to be doing well! We scooted to the hospital, nervously. It again went well, and she was stable.

This seemed to be the turning point. Within another day, Terri Lynne began to gain weight, painfully slowly in our opinions, but never the less, she gained. I called every morning at 7:00 to find out the results and believe me, even a quarter of an ounce was reason to celebrate! She was now able to take formula and several more tubes were gone from her isolet. By the seventh day, she was moved to a regular “crib” and the final tube came out. On the 10th day, she was moved into the regular nursery, and she was still gaining weight every day.

On day 11, her weight reached 4 pounds, 15 ounces, and we were ecstatic! Just another ounce and she could come home! She was thriving, eating well, and looking like a small but normal baby! Her nurse from NICU had followed her to the nursery and was growing attached to her. She even came in on her day off to feed TL, and I was so glad that she cared as she did.

On the night of that 11th day, as her father and I stood looking through the glass while she held TL, our nurse came to the door of the nursery and said, “You haven’t even seen her without the glass between you, have you?” We said no, and she looked around, no one was in the area, so she pushed the door open and held our little girl so close I could smell her! And I ached to hold her, but followed Dr. T’s directions! In fact, I ached so much that my milk began to gush! I had been pumping my breasts to prepare for nursing her once she was at home. For all the trouble and pain that pumping was, it was worth it, because I knew that I would make it now!

Then, on day 12, her weight was 4 pounds, 15 ounces, again. Good, no loss. But no gain either!

Day 13, 4 pounds, 15 ounces! I was miserable! Why wasn’t she gaining? I was beginning to feel anxiety, and tears were always close behind the eyelids.

Day 14, 4 pounds, 15 ounces. I hung up the phone and cried. No burning eyelids could hold back the tears this time. I felt that I was never going to get my baby home with me. About an hour later, the phone rang. It was Dr. T, and my heart stood still! Was something wrong? Why was he calling! He said, Mrs. N, the baby is still at 4 / 15. Yes, I knew that. He said, I think we are going to let her go home, because she is remaining stable and I think she will do better at home.

I don’t think that I shrieked into the phone, but I felt as if I did! When? He said just as soon as we could get there, he was signing her discharge right now.

My husband, Scotty and I nearly flew to the hospital. Dear little Scott had to wait again in the lobby while we went up to get the baby. He was so eager!

Once we dressed her and wrapped her up, our favorite nurse wanted to be the one to carry her out to the car. So off we went. In the lobby, Scott saw us and came across the room in a funny little gait, run 2 steps, then stop dead still, then take a little slow step, then stop again and stare. The nurse said, “This must be the big brother I have heard about.” We agreed, and she immediately sat down on the floor in the middle of the lobby, and had Scott come over and see and touch his little sister. He was spellbound! He looked up and said, “Mommy, she’s so beautiful.”

Scott’s love for his baby sister lasted for a long, long time. He truly adored her. Not that she didn’t get on his nerves at times, but the closeness we had during the pregnancy had paid off. He thought the world revolved around her for quite a while.

~ ~ ~

AFTER THOUGHTS
Losing a child is horrific. At any age, stage, or condition, it is painful beyond your wildest imagination. I thought my heart would break when I lost my parents in 2000, just 3 weeks apart. However, it was still less traumatic than the loss of my babies, and my fear at the possibility that TL might not survive her first few months. I wish I had the words to explain for you to understand, but I don’t know that there are such words in this world. I only know that of the sad and lonely times of my life, those 3 years are at the top. They are only topped by the crushing fear I felt in the 2 weeks before I brought her home. Every day I feared I would still loose her. Once I held my baby girl, the world was brighter, and when I was finally convinced that she would not vanish, my healing began.

The healing is still not complete, and it can’t be.There are scars, 5 tiny little burning wounds in my heart that will remain until someday when I will hold them.

Five little angels,
maybe more,
waiting for me
on the other side.
I had no chance
to know them,
to hold them.
They were gone
before a breath was drawn,
before I could
touch their tender, soft skin.
At first I cried,
then the numbness began
and grew with each loss,
until my mind strangled.
And people said,
“But you’re young,”
and they said,
“You’ll have another.”
But over and over
I tried
and I cried.
And my heart broke.

When the time’s right
and I cross, too.
I’ll know them.
I’ll hold them
and the ache will be gone.