Tonight I came to Mallorie's blog to look for updates from other moms on their babies, and for updates on those who have lost babies. I only know a couple of the moms I've linked to in "real" life, but the others have become real to me, too, because of the things we share. We've been chosen by God to love babies who some people have problems accepting, and we all are so grateful for this. First, because we have learned that we were wrong to pray for only healthy babies (but we didn't know any better), and also because we all realize at one point or another that we have been given the chance to love babies who might not even have been allowed to be born on their own terms, if they had been given to another family. We are grateful that we had the chance to give them their lives, however long or short they might be. And to love them and be loved in return.
Because some of them have lost their babies, as I have, they share things about their grief journeys that I feel, but just can't put into words, and reading them helps me. Or their babies are alive, and they celebrate small gains the way I always did, and I get that. I am grateful to see in their words, the passion they have about their "special" daughters and sons. Babies whose very lives fill their parents' and siblings' hearts with love, but babies who some very educated people have spoken doubtfully about. Even unkindly. Babies who have had very grim predictions pronounced over their beds, and documented in their medical charts.
Babies who have been created by a God who does not make mistakes when he forms His people, no matter what is written down anywhere else.
I use the sidebar mostly to check on blogs, and I really need to update that sometime. I don't have the energy for keeping up with reading these much, and while Mallorie was with me, I didn't either - and also didn't usually feel that I had the time. But I'm glad those blogs are there, because sometimes I need to find my way to these stories, to learn that I need to pray for an upcoming surgery, or a birth, or maybe I think I have a suggestion (not lately) that could help. Or I just need to read the words of someone who knows what I feel. Carley had sent me the link to her post, "100 things I am grateful for," and I wanted to write something like that, too. I have more than 100 things. My list is never-ending, but I just can't complete anything I sit down to write, so instead I just went to read, and I saw this: http://iseeloveblog.blogspot.com/2010/11/renewed-thanks.html, posted by the mom of a beautiful little girl named Lily, who happens to have Trisomy 18, one of the genetic conditions that Mallorie might have had, though we never got the testing to tell if she did. I had already heard about Jedediah, the little boy that Lily's mom posted about, because his mom belongs to the Trisomy 13 parent group I belong to, and she had sent the link to his blog. The post Jill linked to broke my heart, though. Jedidiah's short life was filled with too many hours of fighting on the part of his parents.
We never got genetic testing for Mallorie, because Dr. R, a specially trained doctor who did Mallorie's in-depth ultrasound, told us that he was sure she had either Trisomy 13 or 18, and if she did, "No one will touch her." I will always be grateful to him for telling us this, because it was echoed later on (same day) by a local mom who had lost 2 babies. One within moments of birth from a burst sac on his back (he had spina bifida, just as Mallorie did), and the other after 18 months, because he had holoprosencephaly AND spina bifida. Neither of those caused his death, because mom chose a c-section when she learned the second boy also had spina bifida, and she wanted to prevent the back from opening, and she had to leave her OB and find another one willing to do a c-section for her, and that was no easy search. But when they requested surgery on his back, the doctors at the very same "children's hospital" Mallorie was transferred to for the very same surgery in her first day of life, refused to do anything for him. It took months before they found another hospital in Dallas where a doctor finally agreed to do the surgery, which was a success.
So God let us know very clearly what we would be up against, long before Mallorie's birth, and I told our pediatrician we expected to have to go to Dallas for surgery on her back, if our baby lived. And I said I did NOT want genetic testing. Knowing Dr. B did want testing - she always said, "Knowledge is power," - I added that we could always get it later, but for now, no. She didn't argue with me. None of us had a lot of conviction we would be lucky enough to have Mallorie for very long, but we NEVER had to argue with Dr. B about giving Mallorie a chance. About a month before the adjusted due date (I am certain Mallorie was actually born a couple of weeks late), Dr. B asked us for a birth plan. I had read online birth plans, and had even sent her a link to a sample one I had found online for a baby named Abigail, who had Trisomy 18. But as we got closer to delivery (which the "books" told Dr. B could be a month early), and Dr. B wanted us to draft our own birth plan, I just couldn't, so I tried to ignore the question. John and I had ideas but we couldn't articulate them to each other, much less write them down. Well, I guess I couldn't write them down. John was much better at it, if I'm honest. But I didn't want to even meet with her, because it felt so final. And, what if we said one thing, and things looked very different to us at birth? I didn't want us to be held to something that we changed our minds about. I had never had any experience with anything like this before, but I had a very strong feeling that writing the "wrong thing" down could be dangerous for an unborn baby. Dr. Brown reassured us that she only needed to have a very clear understanding of what our wishes were, so that she could honor them. That she would be with us the entire time, and would never dream of not allowing us to change our minds on anything, but she just needed somewhere to start, and to be able to tell the nursing staff and the NICU doctor what our wishes were, so there would not be any confusion. So with her help, she wrote down what she got out of us the day we sat in her office at lunchtime. Our plan included oxygen if needed. IV. Rescusitation and intubation if needed. Because I told her, we don't know, none of us know until she is here. (I thought she was a girl, but no one could ever tell us for sure.) Let's wait until we see HER, to make our decisions. Let's find out what there is to find out, before we try to guess if she has a chance to live or not. We can always change our minds if it looks like she has no chance of survival, and it can be a very compassionate way to let her go. I knew that being intubated would mean she'd get some sort of sedation, and that didn't sound like "suffering" to me. I'd seen babies on vents. Being on a vent is not a terrible thing and may not need to be permanent, but not doing anything - if it's needed - before we knew anything, well that would mean no chance at all. She might need only very small bits of help to survive, so giving her the assistance she needed at birth would give her a chance to get the help. It would also mean we had the time to really understand her, to see how she did after delivery. Because before birth, she was doing just fine.
This is not how it was for Jedidiah's parents, and it is not how it has been for many other babies like him. But Dr. Brown had been praying for Mallorie before she even met her. She said that she had trouble falling asleep the night before the labor induction, until she gave the situation over to God. She had told us as soon as we told her about the ultrasound, that she was our "instrument." She would be there the entire time at delivery, or not, whatever we wanted. She went into that delivery room after asking God to make things clear to her, so she didn't have to try to "make" decisions or to guide us to make decisions. That it would be clear. And God answered that prayer for her. Jedidiah's parents requested a cardiology consult. And there was a fight for that. When we had met with Dr. B to write down the "birth plan," I told Dr. B we really wanted the local pediatric cardiologist, a man I know and highly respect, to look at Mallorie's heart, to help us know what it was like, in case there was something so "wrong" about it, that it would tell us that she would probably not survive. We never saw Dr. K, but I know he saw Mallorie's heart very early on, because either Dr. B or the neonatologist gave us the report when they were telling us that they recommended transferring her to the children's hospital for surgery, because her back being open was an immediate threat to her life. I used to remember almost word for word the report he had given them, but it was something like this. That she had several defects, but that many babies have those same defects, and live with them. That they did not look like they would be an immediate threat to her life, and that if she needed surgery for any of them, it wouldn't be right away.
So even when we got so many different stories about her heart in her 2 months she spent in the NICU at the other hospital, I held in my heart the report from Dr. K, that her heart was not the problem. And ultimately, he was right. Her PDA, ASD, and VSD all closed over time, with no surgery needed at all. But I needed the "promises" we got from him, to carry me through those early months. He offered us hope.
Over and over in Mallorie's life, God gave me people who told me truths that I had to hold onto during times of crisis. Another family I met while I was pregnant, after I told them what was seen in the ultrasound, urged me to insist on a c-section. Their child had spina bifida, and the mom had a c-section. They were a little intense about it, and wouldn't hear that I was still waiting on God to tell us what we should do about that. But what they didn't realize, and I realized months later, was that God was giving me His answer in that very visit. Not at all the message they were urging me so strongly to hear, but the message in their child's story, which was that when the mom's uterus was opened in the c-section, the sac on the child's back, where the spinal cord had been protruding through the opening in the spine, had started to deteriorate. They told me there were only strands that shredded when the doctors tried to pick them up, and they were useless for closing the back. The message from God in that visit wasn't the message that family wanted me to hear so desperately. It was this: I will do what I will do. You cannot control this. I am completely in control. I know that was the message, because months later, when Dr. B said out loud in that quiet delivery room, "The meningocele burst," I needed to know that. I couldn't remember it for awhile, but God reminded me later on. Because I had gone into delivery believing that a burst meningocele was a death sentence. That first mom I spoke with on the day of the ultrasound told me that. The 2nd family with the girl with spina bifida tried to tell me that, but it was silly, because there was their girl, alive, cracking us all up with her antics.
So what I have learned is this. Ultimately, what is needed for a baby to live out his or her life, however long it is meant to be, is to be wanted. That might take awhile to get to, if you have been praying as we did, for "just as long as the baby is healthy and there are no problems," and then you get results of an ultrasound or other testing that say there are problems. But in time, you can arrive there, to be ready to love YOUR child, the child God chose for you. And what else is needed is to be offered what would be offered for any other baby, if there are problems. Maybe that is oxygen. Maybe not. Maybe a feeding tube, if feeding isn't successful. Maybe not. I don't mean that I or anyone else can know what will be necessary or what should be provided, just that simple interventions should be offered if the family wishes. Just as they would be for any other child. The neurosurgeon told us the day after Mallorie's birth, when we asked WHY her back hadn't been closed and when would it be closed, that they were waiting to speak with us. That they felt we "didn't realize what we were asking them to do," that he didn't think we understood that if they closed her back, she might later have hydrocephalus. Well, sure. I had dreamed she had hydrocephalus near the end of the pregnancy, a very clear dream of her. The ultrasound we had right afterward confirmed that she had it. So if it was not a problem right now, what with all the SPINAL FLUID dripping out, it still was reasonable to think it would happen later, when she had the spine closed. He said, "Well, if she does have hydrocephalus, you would have to decide whether or not have a shunt placed to drain off the extra fluid in her brain." "So then we would want you to put in a shunt." He said, "Well, I don't think you undedrstand. If we do that, then she would have to be monitored for the rest of her life for shunt malfunctions, and infections. She might need other surgeries."
I remember feeling that I was talking to an insane person, and it sent a chill down my spine. How do you reason with insanity? This was a neurosurgeon, who did these procedures day in and day out. Repaired meningoceles. Put in shunts. Did shunt testing. Repaired or replaced them as needed. Why was he talking as if these were outrageous requests for a baby, when NOT closing her back was putting her at risk for infection going to her brain, and death? I wanted to ask him, but words failed me as I choked back tears of frustration, to do for her what he would do for any other baby he found lying, abandoned in the street, with a hole in her back. Wouldn't he pick her up and rush her to surgery to close her back? What was the resistance?
So this is sad, but I wish I could tell everyone who knows they will give birth to a baby for whom dire predictions are made, to write down a birth plan that says ALL life-saving interventions are requested, and to get the doctors who will be there to sign it. There is no risk that the parents will be "held" to THAT plan, if things look pretty bad at birth, and their hearts tell them that they should change the plan. That many doctors and nurses will be GLADLY willing to withhold care at any point, if the parents request it. That likely, there will be medical personnel falling over themselves to get the chance to speak great predictions of death over their baby, and the real fight will be to hold onto hope, and to try to discern if the grim predictions are true, or only coming from outdated medical textbooks. Because the truth is, even if they choose such things as oxygen if needed, IV if needed, NG tube for feedings if needed, and other such minimal interventions for problems encountered at birth, there may still be resistance. There may be a fight.
But for one very lucky family in Beaumont, in February 2007, there was a different story. A neonatologist and pediatric cardiologist were waiting for the birth of a special baby. The nursing staff were ready. Extra nurses gathered in the room when the time came close, and one knew how to comfort, because she herself had a girl with Down Syndrome. Another had lost a baby either before or soon after birth. Friends and siblings gathered in a nearby room, praying. An obstetrician lovingly held out her hands to receive the gift God chose for the family. She handed the little GIRL to the hands of the pediatrician who had moments before been holding mom's leg for pushing. The pediatrician looked in the little girl's eyes, knew her parents wanted her to be called Mallorie if she was a girl, and Mallorie looked back at her and told her, "I'm here for the long haul, chick."
And I am so grateful. I have more than 100 things on my list. These were just the beginning.
In October 2006, we went for an ultrasound for our fifth child, and were told that our daughter probably had a chromosomal defect. We were urged to get an amniocentesis so that genetic testing could be done, “so the doctors will know what decisions to make.” The specialist told us that he suspected Trisomy 13 or 18, and if he was correct, then no OB would do a c-section because it wouldn’t make a difference for the end outcome. Besides, no surgeon would operate on her back (she had a meningocele – spina bifida), because “Trisomy 18 and 13 are what are called lethal conditions. They are incompatible with life.”
That’s how our story with her began, but it is most certainly not the end. As her amazing pediatrician said about examining her at birth, “I looked into her eyes, and she looked back at me and said, I’m here for the long haul, chick.”