the miracle of max

My heart has been very heavy this week. Another difficult bullet on the checklist has been completed. Maxwell’s pathology report from his autopsy was sent to my OB, and we met with her on Monday.

There is nothing more brutal or more humbling than reading a ten page report on the body of your sweet newborn son. We met with Dr. Kang and she sat down with us for almost an hour, talking about Maxwell’s anatomy and the things that attributed to his death. She explained his particular defects, patiently answered our questions, and handed me tissues when tears were streaming down my face.

Maxwell was perfect- perfect size, perfect organs, liver, kidneys, perfect brain, little fingers and toes, skin, eyes, lungs- everything except his heart. We thought that maybe he suffered from a heart defect, which he did, but it was much worse than we thought. Maxwell had several heart defects. Several debilitating, fatal heart defects that alone may have been treatable, but combined together left no options for intervention.

When I heard this news I cried and cried and cried and cried with RELIEF. What a RELIEF to know that it wasn’t anything I did or did not do, that there is nothing in our genetics to cause this. What a RELIEF to know that even if we had known at our 20-week anatomy scan, that there was nothing that any surgeon or hospital could do. What a RELIEF to know that I enjoyed my pregnancy, and happily looked forward to his birth. What a RELIEF to know that those peaceful few minutes we spent together were not clouded by any pre-existing knowledge of his condition. We did everything right. Everyone did everything right. This just underscores our belief that Max wasn’t meant to stay- that our Heavenly Father had a plan for him, a short plan, and he came and did exactly what he needed to do. His defects were so complex that we are not really sure how he survived so well in utero and secondly survived birth and lived for a whole hour.

Really from what I understand, Max had four main problems. He had transposition of the great vessels of the heart, meaning that his aorta originated from the right ventricle instead of the left ventricle. Both his right atrium and ventricle were hypoplastic (meaning small or underdeveloped) with a hypoplastic mitral valve. He was missing all or part of his pulmonary artery, which is the artery that leads to the lungs so the blood can be oxygenated. All of these defects have certain open heart surgeries that can be performed to try to “fix” them, some require the use of a special hole called the ductus arteriosis. When the baby is in utero, there is no need for all of the blood to circulate through the lungs to get oxygen to the body since the lungs are filled with fluid, so the blood bypasses the lungs and goes through this special duct to the aorta and out through the body. When the baby is born, this little hole closes up and the heart and lungs function normally. To repair certain heart defects, a special medicine called prostaglandin is administered at birth to keep the ductus arteriosus open for blood flow.

Maxwell did not have a ductus arteriosus. No medicine could have been administered to buy him some time before surgery. Our doctor explained that she wasn’t sure how Maxwell had turned so pink and was screaming so loudly since there was no clear way for his blood to be oxygenated. She said that for his short little life, most of the oxygen in his blood probably came from my body through his umbilical cord before his delivery.

On paper his defects sound really horrible, and they are, I realize that. But for Max they were perfect. Perfectly engineered to survive development, to help grow a big chunky body, to tolerate birth and to live for just a little while so we could meet him, say hello, sing a song and stroke his face. Each defect had a purpose and made it possible for him to live and join our family.

For me, any sort of questions of “what if” have been answered. I feel so incredibly relieved. At the same time, I feel completely devastated again every time I realize that we have lost a child. That our big full term baby died shortly after birth, that there was something wrong with his body and that it was not compatible with life. I’m not sure if that pain will ever go away, I feel like I’ve cried all of the water out of my body yet again this week. This report answered so many questions, and I’m so thankful that through science we can see the miracle of his little body that was created by God for Maxwell. Knowing this doesn’t fix anything, it doesn’t make the pain go away, but it helps me to understand the life of my son.

One of a kind, that baby of ours. Special, unique, one of a kind.