Maddox Lewis Heiar

September 15, 2017

We were so excited about being pregnant for the first time. We painted the baby's room, started decorating and stocking up on diapers. We were so excited about meeting our little Maddox. Everything was completely normal until 19 weeks into the pregnancy. Leilani thought she might have been leaking fluid so we went to the emergency room. At first everything checked out okay and we had an ultrasound done to make sure Maddox was still okay. The ultrasound tech said that she was just checking for fluid leakage but I got a suspicion something was wrong when the ultrasound took longer than we both expected and the tech was examining his body, specifically his arms. When that was over it felt like we waited forever to hear from the doctor again. Several hours later the doctor came in the room, shut the TV off and sat down. I immediately knew something was wrong. She said that they found abnormalities with Maddox's bone structure. His arms and legs were significantly short in size compared to the rest of his body. He also lacked nasal bone structure and had a growth on the back of his head. The doctor informed us that these are all signs of Down Syndrome. I know the doctor talked a bit more but after hearing “Down Syndrome” I don’t remember anything she said. Leilani and I both cried and held each other. I didn't know what to think and didn't know what our future would be like but I tried to reassure Leilani that everything would be okay.

 

That weekend the house was quiet. We did a lot of thinking. I thought about what it would be like to raise a child who could possibly have Down Syndrome. I knew that didn’t mean I would love him less, he would just require extra care and extra attention. We were not angry or mad, just sad. Having to wait over the weekend, without any answers was excruciating. 

We had an ultrasound done the following Monday and had a consultation with a Maternal-Fetal Medicine specialist. He informed us that he did not believe Maddox had Down Syndrome but rather a form of skeletal dysplasia. Along with the lethal skeletal dysplasia, Maddox also had Cystic Hygroma which is also lethal. At that moment I wished that our son had been diagnosed with Down Syndrome instead because that at least meant he could live. The chance of our little Maddox surviving birth was extremely slim, his diagnoses were described as ‘incompatible with life outside of the womb.' 

 

We remained optimistic but realistic. We hoped for the best but were prepared for the likely outcome. I hoped and prayed that I would be able to hear him cry at least once, see him blink and watch his little body move on his own. Leilani and I made the most of the time we had with him while he was safe inside mommy. Leilani would read him books and talk to him. I would constantly tell him that I loved him and couldn’t wait to see him. Although we both wanted to meet our little boy we knew while he was in the womb he was alive and safe, so we wanted him to take his time. 

We continued to go to our regular OB appointments and every time I would pray that it would not be our last visit. At every visit my heart would stop when the doctor would first try to locate his heartbeat and I would be relieved when I would hear that beautiful sound of his heart beating. At one appointment the doctor was unable to locate his heartbeat with the Doppler so we had to do an ultrasound. Waiting in the room for the doctor to start the ultrasound seemed like an eternity. It took everything in me to be strong and hold back tears. Then came the moment that broke our hearts again; his heart was still beating but there was extremely little amniotic fluid. The doctor contributed it to kidney failure. Upon finding out about the lack of amniotic fluid and that it was possible Maddox had kidney failure, the amount of time we were expected to have with him slowly decreased. 

 

Our little boy was so strong. He was a fighter. Maddox had three lethal conditions and still fought until the very end. The doctor reassured us that he was not in pain and would not be in pain during the birthing process. He would fall asleep and not feel anything but love. 

On April 27th, 2016 we had an OB appointment. He was still fighting. Nothing else changed during that visit. That day Leilani started feel cramps so we went to the hospital to make sure everything was still okay. During the check in and waiting process we were almost 100% certain that we would get released from the hospital that day. His heartbeat was still strong and they were just going to monitor the contractions to make sure everything was fine. As the hours past the contractions got closer together. Once they determined that we were getting closer to labor everything happened so quickly. I was excited to see my little boy but I was afraid that the inevitable was going to happen. Leilani was wearing a fetal echo monitor on her stomach to monitor Maddox's heart rate. The hardest decision I have ever had to make in my life was made that day. I had the fetal echo monitor removed as we got closer to his arrival.

 

I wanted to continue to hear his heartbeat, but I did not want to hear it if it stopped during labor. As he came out feet first I was praying to hear him cry but the room remained silent. After four hours of labor and immense anticipation, our little Maddox was born asleep into the hands of God. As we wrapped our arms around his perfect little body, we knew that God had already wrapped his arms around our sweet Maddox. Born at nearly two pounds, 11.5 inches long, he was the most amazing little bundle of perfection. We are so grateful to have received a beautiful cradle from Bridget's Cradles especially made for our precious Maddox. The cradle fit him perfectly. His body was very fragile and the cradle made it easier to hold and cradle him in. It is amazing to know that his cradle was made with so much love. His little body was so precious. He could not have been more perfect. 

We spent the remainder of the evening with family and friends, completely surrounded by love and support. We were able to spend the entire following day with him and it was the best day. 

Our ultimate goal was to give him the best quality of life and not quantity. His life was filled with love; he knew nothing other than the feeling of being loved. Even though we can no longer hold him in our arms, we will always carry him in our hearts. He is always with us, forever. Because of our son we are stronger, we know unconditional love. He is the biggest blessing in our lives and we cannot wait to hold him in our arms again.   

“We have this hope as an anchor for the soul; firm and secure.” Hebrews 6:19

 

Photo credit: T.Marie Photography, Wichita, KS

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