Malachi with Mom and Dad

"And we know that in all things God works for the good of those who love Him, who have been called according to His purpose." Romans 8:28

Our family's story of heartache and triumph began on October 2, 2013. My husband Nick and I went in for our 5 month ultrasound. I was 18 weeks pregnant with our third child. We were so excited to see our baby, and find out if we were having a girl, or a third boy. Our joy was turned to concern when our doctor told us that our baby had a possible heart defect, an enlarged kidney, and a cleft lip. She wasn't sure if the issues were separate, or linked to a bigger problem, so we were sent to a high risk pregnancy specialist for another ultrasound the following day.

The first thing the specialist examined was our baby's heart. As she took measurements and talked quietly with the ultrasound tech, she discussed with us the possibility of delivering with heart surgeons at hand, ready to carry our baby away after birth for emergency surgery. But after further examination, the doctor realized the severity of our baby's heart defects. When I asked her if the baby would survive, she quietly replied, "No."

The remainder of the ultrasound was very emotional for me. I remember weeping with my hands on my face as the ultrasound progressed. I was in a daze, it didn't seem real. The doctor confirmed a full cleft lip and palate. A missing corpus colossum, 6 fingers and 6 toes on both hands and feet, a 'rocker bottom' foot, 2 fatal heart defects, and she didn't believe the baby had eyes. They also couldn't determine gender. The doctor told us she believed our baby had Trisomy 13, but it would need to be confirmed by a blood test. (That would also tell us gender.) The doctor said our baby would not survive the pregnancy based on the severity of the heart defects alone. She gave us the option to induce labor, but we never considered it. We knew that this pregnancy was the only time we would have with our child, and we couldn't cut it short. Our baby's days were numbered, but by the Lord alone. No matter what, we would choose life.

When we got in the car, I was so desperate to hear from God. I was overwhelmed with sorrow. I opened up my bible, and the first thing I read was Luke 21:13, "This will be your opportunity to bear witness." Other translations say, "It will lead to an opportunity for your testimony.", "This will be a time for you to serve as witnesses.","In the end, all this will be evidence of your fidelity." So I don't struggle with the question of 'why'. God didn't want our child to be created with fatal defects, but He allowed it. That isn't a result of an unloving God, it's a result of living in a sin-filled World. But God showed us right away that He was present, and He was at work. He is purposeful, and He uses all things for the good of those who love Him.

I am not going to say the pregnancy was easy, because it wasn't. It was an emotional roller coaster filled with joy, love, and intense pain. We were preparing to lose our child at any time. The blood test confirmed Trisomy 13, and also told us we were having a boy. Our third boy! That brought joy to my heart. We could proudly stop calling him 'the baby'. He was Malachi Joshua.

After several more ultrasounds in the following months, our doctor stopped talking about Malachi being delivered stillborn, and told us to prepare for a live delivery. The thought of meeting our son alive brought us both joy and fear. We wanted to feel him warm, hear his cry, and hold him as he entered eternity. But at the same time, everything was speculation and the possible scenarios were endless. The most difficult part of this journey for me was all the unknowns. They created a dark cloud above our heads that we carried for many months. Yet through it all, we had time with our son. I got to feel him move inside of me. My husband and I went to sleep every night with Malachi safe in bed with us. Our boys got to talk to him and see my belly grow. For a time, our family was all together and felt complete. We had birthdays, Halloween, Thanksgiving, Christmas, and New Years together. I wouldn't trade that time for anything.

And the Lord was very close through it all. He gave me many more verses throughout the months in the exact moment that I needed them. The Bible had never come alive to me as much as it did then. I remember feeling extremely overwhelmed at a funeral. I opened a bible and saw John 11:25-26. (This was a pivotal moment for me!) "Jesus said to her, 'I am [Myself] the Resurrection and the Life. Whoever believes in (adheres to, trusts in, and relies on) Me, although he may die, yet he shall live; And whoever continues to live and believes in (has faith in) Me shall never [actually] die at all. Do you believe this?"

At 37 weeks, I went into labor naturally. Malachi Joshua was born on February 7, 2014. He was beautiful! We had a photographer from the non-profit organization Now I Lay Me Down to Sleep, and she captured beautiful pictures of our time with Malachi. I will forever treasure that. Our family and close friend met Malachi. We held him, prayed over him, and soaked up every moment with him. He couldn't have been more precious.

The following evening, Malachi's color and breathing changed. Nick and I held him close while the nurses gave him oxygen and morphine. We wanted him to be comfortable and relaxed. It was private, it was beautiful, it was devastating. Minutes before he passed, Nick opened the bible and cried as the Lord once again made Himself known to us. Nick read Matthew 16:28 "Truly I tell you, some who are standing here will not taste death before they see the Son of Man coming in His Kingdom." Malachi was with us for 40 precious hours, and then he was called home.

We mourn for our loss, but we don't mourn for Malachi. He is healed! He lived out his days with us, and he knows he is loved. He is perfect, we are still terminal. He sees the face of God, and walks with the angels. We have no regrets. The greatest gift we could give him was life. We rejoice that we were given this time with him despite the odds. He will always be our miracle baby! And we will never stop sharing the story of Malachi's life. God is good, and He can do great things in the midst of tragedy.

If you want to see Malachi's slideshow: Christina Dufek - Nothing is Wasted | Facebook

 

   

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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.