Dear Friends and Family,
It's with a heavy heart that we write this letter. Yesterday we had an incredibly long and intense day at CHOP to figure out what was exactly wrong with our tiny, little, beautiful, unborn SON. Yes, we found out we are having a boy. We were very hopeful as we drove down to CHOP hoping for the best outcome. Unfortunately, God had other plans for us.
Our day started at 7:30am and ended at 4:30pm. We first had a 3 hour ultrasound, then an echocardiogram of the baby's heart, then an MRI of his entire body, and finally we met with the high-risk perinatologist specialist Dr. Bebbington and geneticist specialist Stephanie. Dr. Bebbington took us step-by-step through our baby's body. The news was devestating because our son has something critically wrong with almost every major organ/body system. It was hard to comprehend, especially since he is in constant movement inside of me, and on the scans he was always pushing against the probes. We will try to break it down for you as simply as possible, but we are asking that if there is something or some word you do not understand to please look it up online. Things are just too overwhelming right now to answer alot of questions. We are asking that you please be patient with us. We have alot to digest in the next few days and months.
Dr. Bebbington started with the brain. There is fluid on the brain possibly from a previous bleed or blockage, but they cannot tell exactly. The stomach is enlarged and not draining properly due to a blockage or narrowing/stenosis between the stomach and duodenum. The liver's duct system is backing up because there is no gallbladder and the body's toxins are not being filtered out. They call this biliary atresia which is life threatening. Now the heart---there is a hole in the heart between the ventricals so the blood is not flowing in the right direction throughout the baby's body. This is called ventricular septal defect. The right kidney is small and in the pelvis rather than in the right lower back. It is quite possible that it is not functioning. The most mild of the abnormalities is the left arm that is missing the radius and thumb and is bent at a 90 degree angle. Dr. Bebbington believes our little boy has what is called Trisomy 18, a chromosomal disorder (which will be confirmed at his birth). In the doctor's words, "Trisomy 18 is not compatible with life." This means our son may not make it to full term, and if he does he will not live longer than a couple of months. This is very hard for us, especially since he seems so alive in me. The doctor said the baby is doing ok right now because my body and the placenta are doing the work. But, once he is born his body would have to take over, and his little body can't do it. There is no cure. There is no surgery. There is only hope in our God. He is the Great Physician.
We know this is alot to take in. We are completely overwhelmed at this time, but we continue to take one step at time and are depending on God for strength and wisdom to see us through the future. The first Bible verses given to us were found in Isaiah 43:1-4a, "But now, this is what the Lord says--He who created you, O Jacob, He who formed you, O Israel, 'Fear not, for I have redeemed you; I have summoned you by name, you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you; when you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord, your God, the Holy One of Israel, your Saviour. You are precious and honored in my sight, and I love you.' " We know we have been chosen specially to walk this road, to pass through these waters. Our prayer is that through this trial, God's name will be honored and glorified. He does not make mistakes. Even though our son may not seem put together correctly, God made him perfectly for us, and we will love him no matter what. We will treasure the time we do get to have with him.
We decided to name our son Isaiah (influenced by the verses above) which means "the Lord saved." His little mismatched body is already saved by our wonderful Saviour, and when God decides to take Isaiah home we understand that he will be saved from his little broken body, never to suffer. He will be made whole in heaven and Chris and I will see him again someday as promised to those who trust in God with their whole heart, mind, soul, and body (as King David did in II Samuel 12:21-23, Romans 10:9-13).
Continue to pray for all 4 of us, specifically for peace in the midst of this storm. Thank you already to those who have sent encouraging emails, letters, phone calls, and brought meals. We really appreciate it.
In Christ's everlasting arms, Chris, Joy, Josiah, and Isaiah Miller
P.S. The best way to reach us is through email. If we do not respond back immediately, please do not take offense. We are still just trying to digest everything. We will update periodically as the pregnancy progresses.
Here is video of a family who went through what we are now facing with Isaiah having Trisomy 18. We hope to touch people live's through this experiece as they touched ours.