I couldnt help but feel that something was different with this pregnancy, but couldnt really put my finger on it. My belly grew, planning continued and excitement was brewing. That twenty week anatomy scan was coming up and we were ready to find out about this squishy mystery.
I had high hopes of a natural birth this time and wanted my younger sister to be apart of the process. So it seemed only fitting to invite her to the big reveal. All three crammed into the ultra sound room. My round belly and I laid on the table and I welcomed that warm goo onto my bump. Waiting on the big reveal we watched as little fingers waved over the screen, four extremeties accounted for, and that beautiful profile of babies head and sweet little nose. Measurements were taken, kidneys,lungs etc all check. The tech glided over the heart a few times trying to get a good look, but no luck. So she went ahead and revealed to us a little boy! I had already noticed his wee parts when she rolled over his legs, but didnt want to tell dad yet. I look at my husband as he was gleaming, another boy, a brother for our oldest, a best friend and hubby another buddy. The tech slid me to my side, pushed,poked, and shook my belly to try and get a good picture. With every glimpse of his heart mine sank more. I only counted three chambers. With previous experiance in medical training I knew what certain things looked like on ultra sound, and I knew how a heart worked. This wasnt right, a heart has four chambers. With not much luck she printed keepsake pictures that we carried out to the waiting room so we could be called back to see our midwife. I mentioned that I had a strong feeling they were going to say something was wrong with his heart. My husband and sister tried to keep me calm and reassure me that he was just difficult and that all would be fine. So we sat, each passing around the pics of our little boy.
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A few stood out but none more than Waylon Alexander. A bit reluctant at first because his initials would be W.A.R. So we held off a bit more to make a permanent choice. I took a warm bath and laid in bed, worrying " What about his heart", "what could it be?". So I took to the internet trying to figure out what could go wrong. Looking up images of fetal hearts at twenty weeks gestation and what they are suppose to look like. I found nothing that satisfied me. Days went by and I didnt speak about it because "everything is fine".
The day came for our appointment. We sat again in a waiting room. Flipping through those month old magazines. Skimming through baby gear and making mental checklists of what we would need for this baby and what we have left over from our last two ( kept ALOT). "Mrs.Rainey" my name had been called again, and older woman stood in the door, holding a folder that I could only expect was my chart. Lucas (my husband) was told to wait while they get me situated in a room. The normal weight check, blood pressure etc was done. And I was walked to a big ultra sound room and asked to sit. The tech rambled about the pregnancy, any weird symptoms, was man in the waiting room my husband, was said man the father of this baby and my other two. I wanted to say "duh" but in this day of age you never know, and this lady hadnt seen pictures of our children who look JUST like their dad. And I was anxious, so I just let it passed and answered her other million questions about wether any one in our families had birth defects. Finally they walked my husband in who took a seat beside me. We stared at the big screen in front of us, waiting to see our baby boy again, and I, waiting to find out what was wrong. She took measurements of his bones again, checked for all organs. Then slid to his heart. Carefully examining every section of it. I watched as it squeezed. Three chambers and one small one. Watched as blood flow mixed from red and blue to mixed. Narrowed ways were I knew was suppose to be much wider. I knew something was wrong and that it wasnt just my pregnancy fears. Light from the hall dashed in when two doctors opened the door and walked in. Words I remember from my medical terminology classes were spoken, I glanced at my husband out of the corner of my eye and could see he was nervous. He knew nothing they were talking about, but knew something was wrong. I, knew the specifics they spoke. The doctor stopped and looked at us saying "excuse us for a moment, we are just speaking our doctor jargon, we will explain in just a moment". I explained to him that I already understood what he was saying. He walked a diagram over and showed us what a normal heart looks like, then explained what was wrong with our sons. He diognosed him with Critical Aortic Valve stenosis. He also explained that his left ventricle was very small, so had four chambers but one wasnt working right and that from his years of experience, it would eventually grow smaller and not work. He went on about how it was so bad that it would eventually turn into Hypoplastic left heart syndrome. That our son would be a very needy baby and that percentage of life was low, but there was "some" hope, especially with the advancements in surgeries for this over the last twenty years.
We were told we had three options. 1: to put him through three very intense and advance open heart surgeries. 2: Heart transplant. 3: paliative care. The open heart surgeries would occur at 5-7 days old, for the first, 4-6 months for the second, and 18 months - 4 years for the third. Later I learned with research, that even with the three surgeries he would more than likely require more surgeries along the way and a heart transplant by age 18 due to anatomy. Many do not know that heart transplants come with their own problems. People believe that the transplant course is much easier and everything is fine and dandy. IT'S NOT. First another baby has to die for a heart to be available, and many forget that another family will be losing a life so that another may live. Second, you can be waiting for a long amount of time for it, because people dont expect to lose their baby. Also because it all depends on the way the baby dies, like if it passes from SIDS, the babies usually are not found until to late and the heart isnt viable. Third, baby has to be on rounds of drugs for immunity suppressants so their body wont reject the organ. And many also do not know that even years later your body can go into rejection. Fourth, they have a higher chance of having other organs fail, and to get cancer. So yeah, its not the perfect choice either, to us it was a last choice for if his heart was to damaged. Then there is palliative care. More less you keep baby comfortable and let them pass.
The doctor mentioned that there are certain birth defects (chromasomal) that could be a factor in his heart defect. So not only did we just find that our son had a heart defect that would most likely change to one of the worst heart defects, but that he may have something else wrong with him. Like down syndrome. My mind raced with this news. How would we care for a child with this many problems. Selfishly I thought of how people would look at us, I know how many talk about children with mental retardation, and not all are very pleasant!! I thought of how others would blame my husband and I as parents, (later I would learn that we would get blame pushed on us anyways). I wondered how our other children would deal with this, with the heart defect that needed so much care, with mental retardation if he had it. I have taught my children to love all people, but would my teachings still find them. How would their lives be now, not only were we adding another child to our family, another mouth to feed, boo-boos to kiss, hugs to give, time to be managed between now three children instead of two, but, we were adding a child with great difficulties ahead. Difficulties that parents never imagine to happen to them. My poor babies, their lives were changing too. And I felt ashamed that I would be taking away their innocence far to early. My heart broke for them. Since the doctor mentioned a possibility of a chromosomal defect he looked through my chart to find blood test results that I had chosen to do weeks prior, the test tells if there is a possibility of downs and spina bifida along with other things. Mine results however, had not come back yet. So he gave me the option of doing an amniocentesis, and since there was a chance I might as well go ahead and get it done since pregnancy doesn't stall, and time was ticking, we needed all the time we could to research anything that could be wrong and to weigh our options of medical treatments. So I consented for the first time of our journey to put him at danger. Dad, the needle phobe that he is, stepped outside. I finally relieved my bladder and gowned up. The doctor talked to me once again about how much care this baby would need. He then went on to mention termination. I could not choose this route. I could not terminate this lil being that was was growing in me, even though his heart didn't get the memo on growing the way it was suppose to. This was something no one expected, or chose. This was nothing that could have been prevented, because I did what I was suppose to while pregnant, I ate what I needed to and got plenty of exercise from chasing my other two kids around. I didnt smoke, didnt drink while pregnant, hell I didn't even get in a tub of water that exceeded a certain degrees for fear of damaging this little one. So termination was not an option.
I laid on the exam table, Dr on one side, ultra sound tech on the other. Wand in hand she watched carefully were the Dr would jab a needle through. I knew of the procedure from my earlier medical training, and from my earlier pregnancies when I once again prepared myself by reading everything I could, amazingly enough there was no material on how your babies heart could malform. I knew of the risks of this procedure but I also knew the benefits. I laid as still as possible and tried to keep calm so baby wouldnt get aggitated from my heart rate and start squirming, because well he had enough going on. A small needle went in "a little bee sting" the doc said. It burned, but I stayed calm, this was nothing compared to what my baby would have to face in the future, so I took the small blow. Then a MUCH larger needle was presented in front of me, I cringed at this. I watched back and forth from the needle in my ballooned belly to the screen were my baby was, hoping that he didnt move, willing him to stay still so to not be punctured by this huge object.
We went home with our news like a black cloud hovering over us. We spoke about our options and my husband voiced that we can't take our son home to just die. We have to give him a fighting chance. So we chose the three surgeries with a possibility of a heart transplant in the future. Our hearts shattered as we drove to our other kids, wanting only to hug and cherish them and their health. We knew that from this day forward our lives were changed and that for now on we would have to take things day by day.
We gave the news of our baby and could tell that it affected so many, but knew that none of them could ever fathom the pain that we were enduring. I chose to inform everyone and to take a step back for a while. Away from social media, phone calls, anything that may stress me. I wanted to focus on what was going on and to give my time to my other kids who would be thrown into this whole messed up situation. I just needed to gather myself and allow myself to grieve. Grieve for the normal pregnancy I wasn't going to have from that day on, from the birth I had been planning for. For the normal life that I imagined this baby having, our family having. Nothing would be the same and I needed to grieve for that. And I needed to be angry, for all that was being taken away with this. For what my baby would have to go through and my little family. My husband and I were heartbroken, but we had two other kids to keep healthy and we had a routine to keep. So we marched on, to a different drum beat now, but still marching none the less.
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