Change in Diagnosis

We went for further imaging of the baby which resulted in different observations. Originally, we were told that baby would not survive because of absence or minimal brain development. Upon further scanning, we were told that the vacancy of tissue was result of a very large arachnoid cyst in the posterior fossa, outside of the brain, that has pushed everything else forward. Although not certain, it appears major parts of the brain are present. Arachnoid cysts have been compatible with life, but the implications of a cyst of this magnitude are unknown. These cysts are not uncommon and often not detected until symptoms occur. Arachnoid cysts are sometimes associated with seizures, migranes, balance issues, etc with people living fairly normal and uninterrupted lives. The problem and question at hand is the size of this cyst, a possible hematoma, and if all aspects of the brain have in actuality formed. Dandy Walker Syndrome and other rare disorders have not been ruled out.

Having received additional information, we are left with more uncertainty. The good thing is that it looks like the baby could survive while the bad thing is the uncertainty of the quality of life that this child will have. Everything is still very uncertain and we will just have to wait. Although, I would never change the outcome and I know the Lord is immeasurably blessing our family with this experience, child and his condition, it is a whole different set of issues and preparation having a child with major neurological issues. Neurological problems affect your family in very different ways as opposed to the feelings and mourning of losing a child. The feeling just can't be compared. Mourning is so different to all and so different in every situation. I do continue to feel so blessed to be the mother to this child. I have come to know his spirit and begun to understand the magnitude of his mission and being part of our family which you can never fully explain or comprehend until going through this. Tyler has blessed our lives in ways that a healthy child would not have been able to and I know this baby will as well.

We met with a genetic counselor who discussed future tests. Neurologists opinions and tests need to be performed before concluding a lot of things. We discussed the correlation of this and Tyler. She said that these two conditions don't appear to be related, however, it is hard to believe someone would have two children with such extreme problems. We will probably do some genetic testing on Tyler and ourselves in the next couple months, but I am doubtful that anything will be found. Although the heart appears normal, a fetal echo of the heart will be done in the next 1-2 months because of Tyler's condition. A fetal MRI of the brain is generally done in the 3rd trimester which should give us the most information. It will show with more clarity the size and function of the brain and cyst. An ultrasound will monitor the size of the head for birth planning. Although head size correlates with baby now, there is a chance of hydrocephalus, enlargement of the head due to fluid, which for now simply means a c-section would be planned.

It is amazing what ultrasound and prenatal testing can detect. How grateful we are for testing with Tyler and this baby. With that said, the topic of termination is always brought forth which makes me sad. It is such a personal matter and one that I would recommend all to pray about, seek counsel and seek other families who have been faced with this decision. Talking with social workers, you realize the emotional, physical and financial stress of a critical child. It often leads to very real familial stress. We have been blessed with faith, a great marriage and financial means to afford treatment, however, were not immune to any of these stresses. You don't fully understand the impact unless you go through it yourself. With that said, our family has had a greater positive impact than negative by leaps and bounds. We are blessed for all that we have experienced with Tyler as well as knowing we will be uplifted with all needed to help this child. Our faith, love, perspective and peace have increased because of these children. If I were to list my greatest blessings, not even comprehending every way that these children bless our lives, I would be able to tell you that Scott, Tyler and his heart, and now this baby and his brain are three of our greatest blessings one could receive. They have all helped us have a greater understanding of the atonement, what is really important in life, that God's view of time is so different than ours, and that He knows how to bless our family. I know that He will not give us more than we can handle and as we seek Him we will be blessed. There is so much that I feel and have experienced that I wish I could express in words of how blessed I feel.