Witt’s Story {Birth Defect Awareness}

My name is Melanie, and this is the story of my son, Witt…

I have wanted to be a mom for as long as I could remember. My husband and I were married for two years when we decided to start a family. And thankfully, in no time at all, I was pregnant.

We were over the moon excited about what the future would hold for our unborn child. I would often day dream about what it would be like to take my child shopping, to the park, to school, and everything else that a child would bring. Austan {my husband} and I were so excited to go to our 20 week ultrasound. We decided to not find out the gender until the birth, but we couldn’t wait to see our little one in action.

I remember the day like it was yesterday. The ultrasound started off like normal. The tech was checking out all of the usual things. But at the end of the ultrasound, she said she needed to take more pictures, and we needed to wait for the doctor to come in. At first I didn’t think much of it, but as we continued to wait – I knew something was wrong.

The doctor came in and explained to us that the baby had a small hole in its heart, dilated kidneys, abnormal brain size, extra space at the back of the skull, a two line umbilical cord, and they couldn’t see the baby’s stomach. I was in total shock and completely heart broken.

The doctor told me I could have an amniocentesis right then to find out more information, but they told us they couldn’t do anything until the baby was born. It would just help better prepare us.

We decided against it. We didn’t think the risk of losing the baby was worth what we may or may not find out. I continued my pregnancy with monthly ultrasounds to make sure the baby was growing. And in one of the ultrasounds, they did find the baby’s stomach which was a huge blessing. I also had a fetal echocardiogram where they couldn’t find any major heart defect which was another huge blessing. We just kept trusting God and prepared for our baby.

On October 22nd, I went in for my weekly check up. The baby’s heart rate was not doing as well as it should be. The doctor told us it was time to be induced. And on October 23rd, 2008 at 6:15pm, after 27 hours of labor, we welcomed our 5lb 5oz little boy – Witt Harris Lupher. They rushed him out right away because he was not breathing. But once they stabilized him, the Texas Children’s team brought him in for us to look at him before heading to the NICU.

I couldn’t wait to get over to him and find out what was going on. And the next morning, they finally let me go see Witt. While there, Austan and I were given devastating news. The doctors thought that Witt had Trisomy 18 and told us he only had days, maybe weeks, to live. They had to confirm with genetic testing, but because of Witt’s features and abnormalities, they felt confident that he had Trisomy 18.

Witt1

Our families gathered around as we celebrated Witt’s 1 week birthday. Slowly Witt started to improve. He came off the breathing machine. He was tolerating milk. His heart seemed to be working fine. It was a miracle! The genetic doctors came back with the results and were in total shock. They told us Witt had Trisomy 1. The doctors and nurses had never heard of it, and there was no information about it. There is a one in a million chance of having a baby born with Trisomy 1. It is extremely rare. There are only 30 recorded cases in the world. Each case is very different, and there aren’t any full case studies on someone with Trisomy 1.

After two roller coaster weeks and seeing God’s hand at work, we took Witt home. He was taking a bottle. He didn’t need any oxygen. He was just our little baby. But we knew we still had some things to get checked out. His kidneys would need to be checked again and an MRI was needed on his brain. Otherwise, he was this sweet little boy.

Witt3

At two months, a couple of weeks before Christmas, Witt got very sick. We rushed him to the ER. The nurses ripped him out of my arms and quickly began to put IV’s in, get him on oxygen, and take X-rays. They quickly told us he wasn’t breathing well on his own, and they need to intubate him. Witt was taken to the PICU where we were told they believed he was in heart failure. Once again we were heart broken.

I remember thinking, “God, why did you let me fall in love with this child more if you were only going to take him at 2 months?” Then, God spoke very clearly to me to just trust Him. We soon learned Witt was not in heart failure but had lots of fluid around his heart, in his lungs, and all over his body. So the doctors came up with a plan, and he stayed on the ventilator for a week while they gave him diuretics. Witt ended up needing to have the fluid around his heart drained which terrified us, but we knew it was the best option. My mom and I spent two weeks camped out in the PICU waiting room. We spent Christmas morning with other families who had sick children there too. After the two weeks, Witt improved but was unable to come off oxygen. The doctors felt like he just needed a little more time to heal, and then we could take him home.

Witt6

The next 18 months were a blur.

Witt was in and out of the hospital. He was very fluid sensitive and continued to get fluid on his heart. At four months, he was in the hospital with breathing problems, and after several tests, we found out that he was aspirating when he would take a bottle. Austan and I were told he would need a feeding tube. We agreed. He had an NG tube for awhile and then had surgery for a g-button. We also found out at four months that his mitral valve was leaking which could have been the cause of his poor heart function. The cardiologist said that children with mitral valve disease don’t live long because there is not a good way to fix it. At this point, it was one blow after another, but we kept trusting God and kept fighting for our son.

Witt7

We continued to be in and out of the hospital as the year went on. In the first seven months, we had been told Witt was dying more times than we could count, and he had to be put on a ventilator for longer periods of time. The cardiologist felt it was time to try to repair his heart.

Witt had his first heart surgery in July of 2009. They removed the sack from around his heart and tried to fix his mitral valve. Witt made it through surgery, and after four months in the hospital, we were able to take him home. A week later – we were back in the hospital. Witt was throwing up and had pneumonia. We knew because of his history with aspirating that he was probably aspirating his throw up which caused the pneumonia. It was decided that he needed a fundoplication in which they tighten a part of the stomach so you are unable to reflux or throw up. Through all of this, we continued to trust God.

Witt made it home just in time for his first birthday, and we celebrated all that God had done in his first year of life. We celebrated how he continually proved doctors wrong again and again.

Shortly after Thanksgiving in 2009, Witt became very sick again. He was back in the PICU. Things went up and down for about a month. I remember one evening, Austan and I were sitting by Witt’s bedside. He was having a harder time breathing, and we noticed his oxygen was quickly dropping. We called the doctor in, and they began to intubate right away. He remained on the ventilator for months after that. It was at that time I began telling God this was no way for a child to live. I prayed that God would take him home or heal him. Thinking those thoughts about letting my child go felt awful, but I knew I had give it all to God.

Through those months in the hospital, we found out more details about his brain abnormalities. Witt continued to stay on the ventilator and remain very sensitive to fluids. He either had too much fluid or not enough. His kidneys began to fail, and we were told that dialysis might be a possibility. God continued to show His power and Witt’s kidneys improved, but we knew something had to be done. The cardiac team got together and decided it was time to try to repair his mitral valve again.

Austan and I prepared ourselves that Witt might not make it out alive. Ten hours later, Witt was out of surgery. The doctors repaired his valve the best they could, but only time would tell if it would help him. Witt was unable to remain off the ventilator after his second heart surgery. We were again faced with a very hard decision. Witt was going to need a tracheotomy or we would discontinue care. Austan and I knew discontinuing care was not an option. Witt was a happy, very alert boy that just needed help breathing, so we proceed with the trach surgery.

Witt did great through the surgery and recovered very quickly. He was becoming more stable from having the continuous pressure of the ventilator. Austan and I prepared to bring our now 18 month old home on a machine.

Witt8

Witt is now five years old and has only been in the hospital for two short stays with a stomach bug. He is still on a ventilator and has a feeding tube, but Witt laughs, claps, rolls, plays with toys, and is so close to sitting on his own. He has a smile that will light up the room. He has traveled all over Texas and even to Winter Park, Colorado. Witt will probably never walk, but with help from therapy, he is making amazing progress.

Witt9

As I reflect on the time spent in the hospital, I know it was all for the glory of God. The lives that Witt touched and changed in his first 18 months of life astonish me. My mom and I made so many relationships and could see God’s work everyday of our time spent in the hospital. We continue to see God use Witt and his story. Each day we have Witt is a gift and an answered prayer. God answered my prayer that day. He did bring Witt home, to his earthly home. God healed Witt in a way that we could continue to love on him, be a family, and use Witt’s story for Kingdom purposes.

Witt10

We still don’t have much information on Trisomy 1, but we continue to take it one step at a time. I never thought in a million years that I would be a mom to a special needs child, but I’m thankful everyday that Witt is my child. The blessings are abundant.

In December of 2012, Austan and I welcomed Witt’s healthy brother Bennett to our family. Witt and Bennett already love each other in a fierce way. Undoubtedly, God will now use Witt to impact and bless Bennett’s life too.

Witt12

Today Houston Moms Blog is dedicated to spreading awareness about birth defects, and Witt’s story is just one of many that we plan to share with all of you.  Please join us as real local moms open up and tell the stories of their little miracles all throughout the day.  Our hope is that we can open the eyes and open the hearts of the moms in our community and that our little fighters will become the brave faces of birth defects here in Houston.  To read more, please click here.

BioAbout Melanie L.

Melanie is 28 years old and has been married to her husband Austan for eight years. She is a stay at home mom to a special needs son named Witt and a healthy toddler named Bennett. She is a believer in Jesus Christ, and she strives to have a deeper relationship with Him. She was born and raised in Houston and lives within a half mile of most of her family.  Her faith and family truly are the most important things to her.  Her life is a little different because of her oldest son Witt, but she wouldn’t change it for the world.  You can read more from their journey here.

, , , , , , ,

5 Responses to Witt’s Story {Birth Defect Awareness}

  1. Avatar
    Tiffanie V January 27, 2014 at 4:46 pm #

    Witt is an amazingly strong little boy (and an adorable one also). Thank you for sharing his story with us.

  2. Avatar
    Lisette Howard January 27, 2014 at 8:01 pm #

    What a beautiful story! Thank you for sharing. My son, too, has a genetic disorder. He was born 08-23-2008 and stayed at TCH in the medical center for 4 months before he came home. I wonder if we were there at the same time? We also welcome a new healthy baby is December 2012! You have two beautiful babies. May God continue to bless you and your family!

  3. Avatar
    Jana January 27, 2014 at 8:44 pm #

    What an amazing testimony of your faith and trust in God throughout all the unknown with your little boy. He is adorable and such a sweet smile!

  4. Avatar
    Chrissie Owens January 28, 2014 at 10:27 pm #

    So wonderful to hear how God worked through Witt and through you. We heard so much about Witt but this was the first I saw pictures of that handsome young boy.

  5. Avatar
    Angela Garrett July 31, 2014 at 1:04 am #

    My daughter mya has trisomy 1 she is now 15 months walking and babbling words she is my Miracle for sure I can’t find any information on it and the doctors don’t know what to tell me either it has been scary knowing this she was a month old when she was admitted for high ammonia levels this is when they found it I was heart broken but she is a fighter and has defied all obstacles in her way I have no idea what lies ahead of us she has 4 healthy older brothers we r lucky to have her

Leave a Reply

HTML Snippets Powered By : XYZScripts.com