Isaiah with Dad & Mom


"Life is not measured by the number of breaths we take, but by the moments that take our breath away." – Author Unknown

This has become one of my favorite quotes. Sometimes it takes something tragic or devastating in order for us to realize the importance of life. And once we do, that sad event may not seem so bad after all…

In early 2011 my husband John and I learned that we were expecting our first child. We were so excited that we were going to be parents. We had prayed daily for God to bless us with a child of our own, and we couldn't be happier. We excitedly shared the news with all of our family and friends, and everyone was anticipating the arrival of our bundle of joy.

My pregnancy was very easy. At 20 weeks along, John and I were so excited that we would be able to go to the clinic and see our future baby during a routine ultrasound. We were also hoping to learn whether we would have a boy or a girl. We were happy to hear that we had a little baby boy in my belly. Then, the physician came in and told us that we would require further testing with a specialist, and he thought there may be something wrong with the baby's head or brain.

This worried John and I, but neither of us thought it was anything serious. We waited until our next appointment two days later. During this ultrasound, the technician again confirmed that we were having a boy. We even got to see the baby in 3D. He looked so perfect! Then we spoke to the maternal fetal medicine physician. The first thing he told us was that our baby was not going to make it. My state of pure happiness instantly changed to devastation. Our baby was diagnosed with semilobar holoprosencephaly (HPE), and we were advised that this is rarely compatible with life. If our baby did live, he would have serious developmental deficiencies.

All I could do was cry. The first thing we did was seek guidance from our priest. Our physician had told us that we could terminate the pregnancy, and that many parents chose this option. I think that is what they expected us to do, but there is no way that we could do something so cruel and heartless. We knew at that point that God had given us this special boy as a gift, and no matter how much time we get to spend with him, we will love him with all of our hearts forever.

We had to do a lot of research about HPE. Neither of us, nor any of our family or friends, had ever heard about this condition. We learned that it affects the brain; the brain does not properly split into two hemispheres like it should as it develops. Semilobar means that parts of the brain in the rear are divided, but not the front of the brain. We learned that this affects children in many different ways. Some children do not live long, and some can live long, happy lives. We accepted the fact that our child may have a disability, but we were going to give him the best life, and be the best parents, that we possibly could.

We tried to enjoy every part of the pregnancy, as we knew that any day could be our last with our sweet baby boy. We continued to take trips, attend events, and spend lots of time with family and friends. We decided to name him before he was born to show our respect and love. We named him Isaiah, which means God is salvation, and it is also the name of God's special prophet.

The weeks leading up to delivery were filled with anxiety and hope. Not only did we have the normal first parent jitters, but we didn't even know if we would be bringing our baby home. We didn't know whether to prepare the nursery or prepare a funeral. We had to be ready to cherish every second we had with our little one, because it could have been his last.

When I went into labor, our families joined us in the hospital, as well as our priest. I had a short labor and delivery. As soon as Isaiah was born I heard him cry! He was baptized immediately, and I got to hold him as soon as the NICU staff made sure he was stable. I have never been happier than I was at that point. I could not control my tears of joy. We spent six days in the NICU, where they ran every test they could think of. An MRI confirmed that he had semilobar HPE, but all of his other tests were normal. We finally got to bring our sweet boy home.

Isaiah is now a happy, smiling, six month old baby. He brings so much joy to everyone who meets him and hears his story. I am the proudest mommy you will ever meet. If you would like to follow our story, you can read our blog at www.loveforisaiah.com. You may also email me at leslie@loveforisaiah.com.

From the point Isaiah was diagnosed with HPE at the 20 week ultrasound to now, as he is six months old, John and I have grown so much in our faith, and in our love for each other and our special baby boy. I may have been upset at first that our baby would have challenges or not make it at all, but now I am grateful for everything I have been through. He has taught me more about faith and love than many people will learn in a lifetime.

Leslie

 

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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.