Kempton Perez, Trisomy 13, 11/25/14 – 11/25/14
“Our son knew nothing but love, our love and then God’s perfect love the day he was born into Heaven.”
My husband and I were expecting our 3rd baby boy, Kempton Tobias on February 13, 2015. At our 20 week ultrasound my Doctor told us that our son probably had a cleft lip and they needed to get a better look at his heart because the pictures were unclear. So October 27, 2014 we went to a more advanced Hospital for another ultrasound hoping for the best. We prepared ourselves for the cleft as best as we could. We were so optimistic and we knew that if our baby had to be operated on that we would get through it somehow even if it hurt our hearts having to see him go through the pain. I never thought in a million years that they were going to find anything wrong with his little heart though.
After the Ultrasound Technician finished up, in came the Doctor. They had troubles getting a look at his little face, so after a couple of minutes I asked the Doctor if he was the man that had the answers. He of course was that man. So I proceeded to ask him about our little guy’s heart. He responded, “Unfortunately I hate to be the bearer of bad news, but there are a few things I am seeing that concern me.” I started bawling uncontrollably.
Then here came what seemed like a never ending list of problems. Our son had 6 different things wrong with his tiny heart, his kidneys were enlarged therefore my amniotic fluid was low, his brain didn’t develop properly, and he also had fluid around his lungs. We weren’t sure of the extent of his cleft, but the Doctor suspected that he had a double cleft lip and palate. The Doctor and Genetic Counselor then told us that they suspected that our baby probably had Trisomy 13. We opted out of Amniocentesis and had the Verify test done, which did in fact show an extra 13th chromosome. We never even heard of this disorder and hearing that our sweet baby boy only had a 5% chance of life devastated us. Our world had changed in a matter of seconds and we didn’t know what to expect.
The Doctor then said, “Now it is time to talk options.” But before he got it completely out I said, “Well you are not God and neither am I so we will let God do what He needs to with our child. If God decides to let our baby live then he will live, but if He decides to take his life then so be it. We are not going to play God.” This was painful enough and we didn’t want any more pain. We were willing to take on the challenges if he lived and we knew that one day we would be reconciled if the worst happened. We started praying for the Lord’s will to be done.
Waiting at home for us were our 2 young sons. Informing excited big brothers about their baby brother’s “ouchies” was a very hard thing to do. Our oldest, who was 6, held back tears and came in for cuddles. Our second son, who was 3 didn’t really understand what was going on. But after speaking to them we all agreed that we were going to trust God no matter what because we knew that God didn’t make mistakes. Every day was a beautiful lesson on life, how precious it is, and how God, Himself ordains it.
I always loved being pregnant but after being told this kind of information, the love for my sweet baby intensified. I spoke and sung to him pretty much every day all day. I told him that he was going to be OK, that I loved him, and that Jesus loved him too. Every day my husband would kiss my tummy and tell his son he loved him. His brothers were so cute! They talked to him every day as well and definitely let their baby brother know they loved him. We also chose to live life with Kempton, to experience things with him. So we went on family outings, went to a few museums, and went on a road trip to Florida to visit family (which was amazing). We even found the cutest little baby blue elephant, named Dewberry, and bought it especially for him.
Well after only 4 short weeks I sat down after putting the boys to bed and didn’t notice our little “Drummer Boy” beating on me like he usually did every night… I knew in that moment he was gone, but I prayed that maybe I was just imagining it. So I went to bed knowing that if it were so, I had peace that it was God’s will. Well 5AM came and I was bug eyed hoping I would feel just a flutter. I didn’t so I got up, I prayed, and boy did I cry. I called my Doctor then went to the Hospital. They couldn’t find our son’s heartbeat with the doppler so they ordered an ultrasound. Kempton had in fact passed away into Heaven. We were absolutely beside ourselves.
I was 28 weeks and 4 days along when Kempton Tobias Perez entered the world. He was born at 11:18 AM on November 25, 2014. He was 3 lbs 1 oz and 13 inches long. For such short stature he was a little chunk. He had chubby little cheeks, a thick tummy, and big biceps like his Daddy! Oh he was adorable! He looked just like my Dad and my 2 brothers. It was like looking into the face of an angel. He was glowing and he was perfect! We did not have an autopsy done so we are unsure of any other internal problems. He did however have a double cleft lip and palate, rocker bottom feet, an extra small appendage on each hand, and his scalp was slightly affected around his crown. Just by looking at him we knew he had Trisomy 13, and later the Doctors confirmed it through another test.
We certainly did not want to let our baby go, so we held him for 30 hours. We were able to kiss and love him the whole time. Many wonderful pictures were taken and my amazing baby sister took most of them. We had photographers from Now I Lay Me Down To Sleep and Bella Baby take some as well. We are so thankful that we had a lot of our family and friends there to support us while I was in labor. Some of them were able to see him as well which was a blessing. His big brothers awaited his presence and welcomed him with so much love, even though they were hurting too. He was surrounded with love and lots of it. There were moments of laughter and then moments of tears, but we cherished every second!
Then came the hardest day yet, it was the day to say goodbye to our sweet Kempton.. I must say his funeral was quite beautiful though. My husband and I were able to place a few things in with him along with the letter I wrote him. My Mother placed baby blue balloons on both sides of his tiny casket. She also had one of our friends make a beautiful train that sat in front of it. On the engine she put the lyrics to “Jesus Loves Me”, it was perfect! A CD was made by my husband, my sister, and one of my very best friends that will forever remind us of our son. Selah’s “I Will Carry You” was sung by my cousin. She truly blessed our hearts even though it was tough for her to sing. His last ultrasound played and we displayed some of his pictures. The funeral home was decorated with so many beautiful keepsakes that were given in his memory as well. We celebrated his precious life that day and it was extremely bittersweet, but we were and are so grateful to have had him.
I am so thankful that the Lord chose me to carry Kempton. Every hiccup, kick, and tummy wave was cherished. I remember waking up the morning he passed singing to him, “Jesus Loves Me” (Jesus Loves Kempton), then “I Will Carry You”, and of course telling him how much I love him. So knowing that he heard me expressing my love to him in his last hours helps me get through. Having his pictures on the walls and seeing his sweet face daily puts a smile on mine as well. I also sleep with Dewberry and his blanket that he was wrapped up in. But really the greatest thing that comforts my heart is the Lord’s unending love. This has been the most excruciating pain I have ever felt, but I know God is right here with me. I know when I am weeping or screaming He is holding me. I am so grateful that I don’t have to go through this journey completely alone.
Our son knew nothing but love, our love and then God’s perfect love the day he was born into Heaven. We will always carry him in our hearts and one day we will see what the Lord did through his short life. We trust many miracles are coming as we have already seen a few. My heart breaks that Kempton is not in my arms but I know he is safe in Jesus’. One glorious day our family will be whole again! Until then we will continue to praise the One who’s chosen me to carry such a precious baby!
We love you Kempton! It’s never truly goodbye, we will see you again!
Love Mommy, Daddy, and Big Brothers
-1 Samuel 1:27– For this child I prayed