Corwin Matthew

Born Saturday April 28th, 2007 at 1:12 am after 37 hours of labor.
Weighing 1 pound, 4 ounces. 12 1/4 inches in length.

His little damaged heart beat valiantly for 3 hours, 8 minutes.
He gave us time to tell him we loved him,
to hold him close and to comfort him as he passed.

Our little boy died Saturday April 28th, 2007 at 4:20 am.

He is missed.

The Brown Star Story

Not long ago, astronomers found in the heavens gaseous celestial bodies--clouds of cosmic dust-- which they think have finally answered the mystery of what exists between the small things in the universe, like the planets, and the bigger things, like the sun. They call this cosmic dust "brown dwarfs" or "pre-stars", because although brown dwarfs have all the elements to become stars, for some reason they never did.

All stars go on to live full lives, from their hot, bright white dwarf stage to their aged cooler and dimmer red giant sage. But "brown stars" only go so far. Instead of being born to live a normal star's life, they remain cool and dim, hiding in the heavens, sprinkled in clusters among the other stars 150 light years from Earth.

But, like our babies, their roles in the universe are very important. In fact, scientists believe they serve as a link between the small things and the big things, holding the universe together: a mid-point between the beginning and ending of our universal story.

As we grieve for our babies who died before reaching stardom of their earthly lives, perhaps we can find comfort in the possibility that they were designated for this very special universal role. Energized by our love, they are guardians of our memories of what was and our dreams of what some day may be.

As we look to the heavens, seeking answers, we send messages of love to our "brown star" babies. - Kim Steffgen

Reality...

sucks.

This morning, we had a photographer from Now I Lay Me Down to Sleep by to take pregnancy pictures. It was very hard for the both of us. It made it all seem much more immediate and real.

This last week has been punctuated by tears. We've spent a lot of time just being together. B hasn't been into the office in over a week, and won't be going back until next week. He's been a little worried about taking so much time off (he's been working from home part-time), but his boss has been very supportive through this. I know he needs to go back to work for the distraction, but I'm just a bit worried about what I'm going to do with myself while he's at work. I have no distractions.

I do have to say that we have received an outpouring of love and support from our friends during this very difficult time. I know there are many people out there who do not understand our decision, but we have been blessed that none of our friends or family have made this situation any harder than it has to be for us.

I've been doing research, trying to find information on the long-term effects of this defect. The information is, not surprisingly, difficult to come by. It is such a rare defect with such a high mortality rate that there are more questions on quality of life issues than there are answers. I did find a small study done in Sweden, which reached the same conclusions we had... "With regard to psychological well-being, quality of life was significantly lower... than in healthy controls." I read through the entire study, and it really helped me make peace with this decision. I will never be happy with it, I will never feel good about it, but I have reached peace that it is the best decision for all three of us.

We have volunteered to participate in a research study currently being done at Baylor into the genetic causes of this disease. We have also been offered a chromosomal study and echocardiograms for ourselves to rule out possible contributing factors. We know that our chances of having another baby with this defect are around 0.5%, and the chances of having one with any heart defect are around 2.5% (the chance for an average couple is ~1%). There is nothing we can do to cure the defect in this baby, but we hope we can somehow contribute to the knowledge that someday can help prevent it in other babies.

I pray that small bit of hope gives me some comfort in the tidal wave of grief I know is to come.

I hope there is a Heaven...

Today, the last hope we had of our baby being healthy died.

The pediatric cardiologist spent almost 2 hours examining the heart of our baby boy. From the beginning, it was evident that it was not a healthy heart. Only 3 of the 4 chambers were pumping blood. The other chamber looked like a knot of scar tissue. B could tell almost from the first picture that it wasn't right, but we both were hoping that the defect would be something that our child could live with.

It isn't.

The doctor laid out our choices and the odds the baby would survive with the necessary surgeries. Even though the odds were better than we thought, our baby would still lead a life of sickness and pain.

Until the third surgery, our son would not be getting enough oxygen. His developing brain would be starved of the fuel it needed to function properly. Three years. It would be three years before he would get the oxygen he needed to be healthy. Who knows what damage that would cause?

Even if all the surgeries were successful, our son would be on blood pressure medication for his entire life. While this isn't the end of the world, it is a problem in a society where healthcare is not guaranteed. It is quite possible that when our son is young and starting out, he would not be able to get health insurance coverage. Especially with a pre-existing condition.

In addition, the doctor indicated that it would be likely that he would still need a heart transplant at some point in adulthood. Since the earliest survivors of this defect are only in their early 20's, it is impossible to tell when that may be. But, from what we understand, transplanted hearts only last 15 years at most. Best case scenario, our child might make it to 30 before their re-engineered heart finally gave up.

But, what really makes us think that letting him go is the best option is the first surgery. It would be over a month before we could hold our child. It would be over a month before he could taste his mother's milk. For a month, he would know nothing but pain and confusion. The doctor told us that he would even need to be taught how to eat because he wouldn't be allowed to eat due to the necessities of surgery.

That is no life for a baby.

So, we are going to let him go. We will grieve. We will remember. We will always love our little boy. Even though we will never get to see him play, we will never see him grow, he will always be in our hearts.

So we hope there is a Heaven. Someplace where a kind soul can take our son by the hand and show him how much we loved him and why we had to let him go. We hope someday to meet him, hold him close and finally be able to tell him we love him.

It's all we can do now.

The pain of hope

I never knew hope could be painful.

We're sitting on pins and needles, counting the minutes until Tuesday. Trying not to hope that this has all been a mistake. Every time the hope fades, despair floods in, in it's place. Every time it's like starting all over again, fresh and new. It's a balancing act between the two, and neither one is gaining the upper hand. As much as I dread what I may hear at this appointment, at least we'll know for sure, and not have that thread of hope looming over us anymore.

B will be working from home tomorrow so I won't be alone all day, and he's taken Tuesday off so we can deal with whatever this doctor has to say. One way or the other, we will have the answers on Tuesday.

I never knew hope could be so painful...

20 weeks, 6 days

Since I didn't get a say in what time my ultrasound appointment was scheduled for (11:30 am), B couldn't attend because of work. I went in, confident that this would be a quick scan to be sure everything was developing on schedule. An hour later, feeling battered and bruised, I was asked to come back in 2 hours. The baby was hiding behind my pelvis and 2 different sonographers were having trouble imaging it's heart. I was advised to get something to eat (which often causes baby to move), and come back in 2 hours so the Radiologist could try to image it herself. I felt the tiniest twinge of concern, but dismissed it. I called B on my cell and told him the baby was being uncooperative about it's heart but perfectly cooperative about it's sex (which we were adamant about not finding out). He laughed and said it figured, we'd be chasing the baby all over the house trying to get it to keep the diapers on. I laughed and decided to run an errand and get some food.

If only I could laugh now.

When I came back, I had a wait (of course), and the radiologist came in to do the scan herself. About 15 minutes later she flipped the lights back on and dropped a bomb. A big bomb. Congenital Heart Defect. What they had seen earlier, but couldn't tell me without having an M.D. confirm it was that the baby's heart is asymmetrical. The left ventricle is not growing.

They let me call B's office (I'd left my cell in the car), I just told his boss to send him home without giving any specifics (although considering I was crying, he probably didn't need them), and they called a genetic counselor down to talk to me. She dropped another bomb. The disease is nearly always fatal. After taking a family history as far back as I could provide, she said she sees nothing to indicate that this is genetic, or could have been expected, and no indication that it would be expected to happen again. It is a fluke, a random happenstance.

I came home to a frantic B, of course, and just collapsed in his arms while he begged me to talk to him and tell him what was the matter. He, of course, sat me down in front of a computer, he sat down in front of another, and we both started researching. I'll save you the trouble.

"one of the most complex cardiac defects seen in the newborn and remains probably the most challenging to manage of all congenital heart defects... without treatment... uniformly fatal, often within the first hours or days of life" - Cincinnati Children's

Short of open-heart surgery on a newborn or a neonate heart transplant, survival chance is zero. That if a good candidate for surgery, survival rates of the first surgery (at a few days old) is about 80%. A second surgery at several months of age has survival rates of about 80%. The third surgery at 18 months-3 years also has a survival rate of about 80%. And even if the baby survives all three surgeries, the survival rate to 5 years old is about 60% (I suck at statistics, but 80%+80%+80%+60% does not equal good news). And then the drugs. For his/her entire life.

All of this falls under the heading of "palliative care". None of it is a cure. There is no cure.

So we've been crying. And talking. And crying some more. Discussing options, quality of life, dreams, desires, fears... and so far the only conclusion we've reached is that we love each other and we'll get through this. Well, that and we both wanted to get rip-roaring drunk...

I finally managed to drift off after B popped in a movie for me. At some later point, he also managed to drift off, since he was asleep (and the tv was off) when I woke up at 3:00 am to pee... because no matter what else is going on, I'm still pregnant, and I can't make it a night without peeing. When I couldn't get back to sleep for the crying, I decided I needed to get this out, so I found myself creating a blog at 4am of one of the worst nights of my life.

We have an appointment on Tuesday with a Pediatric Cardiologist 2 hours away to do a fetal echocardiogram. We have a very slim chance of a false diagnosis. I am not holding my breath. More likely, we will find out the severity of the defect, and the doctor will want to discuss our options.

Pregnancy is amazing

When the first trimester ended, the doctor told me I could finally get off the drugs, that the danger had passed. 24 hours later, I ate. Like I hadn't eaten in months (which really, I hadn't). A few days later I realized how much more energy I had, how I wasn't requiring a nap every day, and I didn't feel completely depressed. I was amazed at the energy surge of being pregnant.

And every day is more amazing.

I've long believed in the over-medicalization of pregnancy. Doctors are in the business of covering their own butts, and the C-section rates in this country are astoundingly high (30% or so) in comparison to every other country in the world (usually 5-10%). So the first thing I did was start researching homebirth midwives. And I started educating myself. The more I researched, the more convinced I was that my home was the place for me to give birth. I contemplated not seeing the doctor at all, but since I'm fully covered for the doctor, and not covered for the midwife, I put off deciding, and kept attending my prenatals.

Doing all this research has a major side effect. I tend to know more about pregnancy and birth in general than the average medical person thinks I should. This means I have my own opinions and thoughts and desires. It means I'm perfectly comfortable refusing certain tests and asking for others. We had long agreed that we wanted to undergo testing for Trisomy, since the effects of Trisomy are usually devastating. Luckily, all the tests came back beautifully. I was automatically scheduled for a 20-week ultrasound, and I discussed my concerns about extraneous ultrasounds with the nurse practitioner. She convinced me that it was a routine test to be sure all the organs were maturing properly. Since all the screening tests so far had come back negative, I figured, okay... I'll go ahead and get the test, just so everyone is comfortable. Even up until the day before at my 20-week prenatal, I wasn't sure I was going to have it done. We discussed it, and B indicated that he felt I should go ahead and get it done, just to set our minds at ease.

If only it were that simple.

Getting to this point

Eight years ago, I sat stunned as a doctor told me I may never have children. That I would almost certainly never manage it without intervention. I was aghast. I always knew I wanted children, and to be told that my body probably wouldn't cooperate was a huge blow. I was in my early twenties, and had figured I had plenty of time to find Mr. Right and get down to the business of a family. Then the doctors told me I was wrong. I grieved. Then I started planning. If I'm being told that the longer I wait the less likely it is, then I guess I better get down to it, huh? I researched Artificial Insemination, I started house hunting, credit repair, and made sure I had good solid health insurance.

Then I met him. And he swept me off my feet. Six weeks later we were living together. A year after that he proposed. And then we were married. We both adamantly wanted children. We knew that we were meant to be parents. We were meant to bring joy into the lives of children, to make up somehow for the joy we never had as children. I was honest up front with him that I may never be able to provide that for us. We agreed that if we got to that bridge, we'd explore adoption, but that we would have children one way or another. But, the first few years of our life together were rough, we had both been laid off, and the job market was tough. We knew there was no money for children, and no insurance for fertility treatments. So we waited. Until the time was right. Until he had a fairly secure job that he enjoys (most days), one that paid enough that I could leave the industry I hated and devote my energies to being a mom.

It took me months to get in to see a fertility specialist. We discussed drugs, diet, testing, all those things that the average person never has to think about in relation to getting pregnant. It took us 9 months, and some pretty heavy-duty drugs, but we finally did it. We found out right before Christmas that we had finally succeeded. We were both on Cloud 9, even though I was sick as a dog. I had to spend the first trimester on drugs to maintain the pregnancy, and they made my life hell. I couldn't keep food down, there were mornings where I couldn't even keep water down. The slightest smell of food could trigger vomiting. I was miserable. But I knew it had a purpose, I knew that at the end of all of this, I wouldn't care about 12 weeks of vomiting or the lethargy or the depression that went with the drugs. In the end it would all be worth it.