‘He was born that way ’cause of his mother. It’s gotta be her genes, something is wrong with her.’ Rumors flooded about our little one.’:  Mom to son with limb differences urges for kindness, ‘We are all beautiful humans’

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Read part one of Jennisan’s story here.

“’Are you aware that your son has abnormalities?’ This question was supposed to have terrified me. Because I wasn’t aware. I had no idea my son had abnormalities. Every ultrasound that had been done, every scan taken during my pregnancy – none of them ever detected any physical issues. But despite the news being unexpected, when they placed him in my arms for the first time, I couldn’t have loved him more. He was mine. My baby. My special prince. A blessing.

Mom holds her newborn born with a limb difference during golden hour in their backyard
Courtesy of Gabrielle Manni Photography

After the nurse grabbed Harrison and left the room with him, my sobs broke through at the realization that I wasn’t going to be able to see my baby for a while. I had tested positive for COVID-19 and wouldn’t be able to go anywhere near the NICU. I wouldn’t be able to breastfeed like I had planned. I wouldn’t be able to snuggle him day and night. Hear his cry. Comfort him. Go home with him to our waiting family. I didn’t even know what I was going to tell Clint. Clint was completely unaware of everything. How was I to tell him about our son’s unexpected conditions? But I knew God had placed the right man in my life. I knew Clint would love Harrison with all of his heart.

The nurses at my side wiped away my tears and said, ‘You’re going to be put on some pain medication and relaxers so you can sleep, sweetheart.’ I just nodded my head. Yes, I needed sleep. I needed to take time to think about everything, figure out where to start on looking for hospitals, what the options would be for Harrison, if he would need special clothing. There were so many questions and concerns beginning to pile up back to back in my mind! I was rolled to my tiny closet-sized room in the Covid Ward. With the little strength I had from feeling the relaxers and pain medication kicking in, I messaged Clint. I was able to tell him just enough before I drifted off.

Mom snaps a photo of her son born with a limb difference sleeping in a baby carrier
Courtesy of Gabrielle Manni Photography

I woke up the next morning to a queasy stomach. I begged my midwife for water. Gags began to break through at how parched I was and I screamed at the pain it caused to my freshly operated abdomen. ‘PLEASE! PLEASE, I NEED WATER!’ I cried. It had been almost 32 hours without anything to drink or eat, how much longer was I to go? My midwife ran out the room and I could hear her shouting for water. I couldn’t take the pain, I kept gagging, but my stomach had nothing in it to let out. Finally, after 20 minutes, they brought me a cup and I was able to quench my thirst. My whole body trembled from the pain and trauma.

There was too much for my mind to take in within 48 hours – finding out I had to have a C-section because Harrison breeched, testing positive for COVID and having to go through the surgery without Clint, finding out on my own that my son was born with differences, having to watch them take him away to NICU, and now having to recover on an uncomfortable cot by myself. The room they had me in was very small with no bathroom. My midwife had to help me off of the cot to urinate in a garbage bag. In the room on the left side of me was a young man with COVID who constantly, painfully coughed. I would hear him vomit every couple of minutes from the strain of coughing. In the room on the right side of me was an older man, doing the same. I couldn’t take the horrendous sounds and I begged God not to let me go through that. I needed to be safe for my children.

I took out my phone for the first time since talking to Clint after the surgery and found so many messages. ‘We love you, Jen.’ ‘We’re praying for you, Jen.’ ‘Praying for you and your little boy.’ I had listened to a voice note my sister-in-law had sent to our family group chat, ‘Jen is so strong, she’s got this!’ she’d said. But at the time, I wasn’t so sure I had the strength she believed I did. My mother had messaged me, ‘Jesus’ love is on you and Harrison. He allowed this because He knows you’re the perfect fit for this child. We will love Harri always with all of our hearts, no matter how different he is. Please be at peace, it’s going to be okay.’ I knew she was right. God saw something in me I hadn’t seen yet.

I was discharged from the hospital the next day. My doctor knew I was very uncomfortable where I was and it was very difficult to recover in that state. The first thing I wanted to do was get tested to be sure I truly had COVID. I had no symptoms and hadn’t affected anyone who was under the same roof, so I whole-heartedly believed it was a false positive, but my doctor recommended I wait at least a week. ‘But what if I need to be there for Harrison?’ I said. ‘The NICU is not letting anyone near the babies, whether positive or negative. It’s for the safety of all the infants.’ I completely understood, so I did as told and waited.

During my time in recovery, Clint and I called the NICU 3-4 times a day every day. Asking about updates on Harrison, and if it would be much longer before he was out. Everyday it was usually the same response: ‘Sir, I can assure you nothing has changed since you called earlier today. Your son is very responsive, very happy, eats very well, is using the bathroom well and his tests are also coming back well. We unfortunately do not know what his conditions are, but we are hoping the orthopedics can give you some information once they have done their research. I’m very happy to see you are dedicated and loving parents, but you don’t have to worry. Your son is one of the healthiest babies in the NICU.’

So why couldn’t he come home yet? Why couldn’t they discharge him? My fear was he was being used as a lab rat or an experiment since they’d never seen a case like his before in our country. When we had asked, the nurse said, ‘All babies have to complete certain tests before they can be discharged. We are waiting for your little one to finish a few more tests and he can be released. Your son has jaundice and has to be under phototherapy. He can’t be released until that has gone away as well.’

I felt for Clint the entire time we prayed and waited for the hospital to discharge Harrison. I went through my own trauma, but he did as well. It couldn’t have been easy to be so excited to meet your first child then to have been told you can’t enter the room, then be told your son was born with undetected differences, then know you can’t even see his face or meet him because he’s in the NICU. It was a long and hard two weeks before we finally received the call that we could pick up Harrison. I had taken my PCR test and had come back negative. We were ready. Our baby boy was going to finally be in our arms.

Family of four welcome home their newborn with a limb difference home from the NICU
Courtesy of Gabrielle Manni Photography

Harrison was diagnosed with symbrachydactyly, syndactyly, fibular hemimelia, proximal femoral focal deficiency and humeroradial synostosis, making him a one in a million individual. Symbrachydactyly is a condition where the hands couldn’t fully form and because of that he only has one thumb and two fingers on both hands. Syndactyly is a condition where the fingers are webbed together, which is only on one of his hands. Fibular hemimelia is a condition where the fibular bone was not formed and proximal femoral focal deficiency is where his femur was not formed, as well as the hip joint, so technically Harrison only has a tibia bone to support his right leg. Finally, humeroradial synostosis is the rarest of all, recorded in only about 25 cases in the world, where the humerus and radius bones are fused together at the elbow to create one bone shaped to create a 100 degree angle. He cannot bend it at the elbow since there is no elbow and he cannot turn his palm upward. What makes Harrison a rare case is the combination of all of these conditions and miraculously having no heart, organ or brain defects. Truly a blessing and living miracle!

When we flew home, it was very hard for us to hear of all the rumors flooding about our little one. We were still struggling to understand all of his conditions and had to strengthen up even more when some things we heard were cruel and unkind. ‘He was born that way ‘cause of his mother. It’s gotta be her genes, something is wrong with her.’ Comments like this added to my depression because his conditions were something I feel guilty for in some way. Although I had asked my doctors many times if there was something wrong with me, and even though I went through genetic tests, I was constantly reassured Harrison’s conditions were not my fault or Clint’s. It was just something that happened.

A little tug on a string. A little ripple in the water. Those unkind souls didn’t know I’d grab a pair of baby shoes and cry because my son couldn’t wear them. They had no idea I had to put away so many pants and shorts because his little leg would make them uncomfortable for him. They didn’t know I had to practically give up my job and felt like a burden to my husband because I couldn’t find anyone who understood how to properly care for him for me to be able to leave the house and work. They didn’t see us shed a tear when we’d see babies Harrison’s age sitting themselves up, pulling up, crawling, standing, walking, dancing, even holding things easily and comfortably. Our son was taking his own slow steps in life, his own way, and we were taking the slow steps right next to him.

Special needs mom holds her miracle baby son after he was born with rare combination of limb differences
Courtesy of Gabrielle Manni Photography

Thankfully, the hurtful comments can’t compare to the supportive, positive, and loving comments we have received. Our son has supporters from all over the world, cheering him on, sending us hugs and kisses from a distance. ‘Count your blessings,’ I always say. We hope to get Harrison into a hospital that specializes in his conditions. Our goal is to one day see him walking. We live in one of the most beautiful countries in the world and we are going to help him enjoy his life to the very fullest.

PLEASE BE KIND ALWAYS. No matter how different situations are, not one person’s trauma is more important than the other. We all struggle with things that have hurt us or we are recovering from. What may look like a breeze to you, may not be to others. Never compare. We are all beautiful and unique human beings. We all have a story to tell and our feelings are valid. I pray you all find peace and comfort through your journey. Know God is with you every step of the way and you matter, especially on days when you feel like you don’t.”

Family of four living in the Bahamas take a family photo together on a white sandy beach with palm trees behind them
Courtesy of Gabrielle Manni Photography
Little boy born with rare limb differences smiles wide for the camera while wearing a Sesame Street diaper
Courtesy of Jennisan Enriquez

This story was submitted to Love What Matters by Jennisan Enriquez of Hope Town, The Bahamas. You can follow their journey on Instagram and Facebook. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.

Read part one of Jennisan’s story here:

‘Here he comes,’ my OB said. The entire room fell into an ear-piercing silence. ‘Are you aware your son has abnormalities?’: Young mom celebrates ‘one in a million’ son born with limb differences

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