The Special Reds: Guest Post: Landon and Mason

Today I am sharing the story of Jaime, who I met from the Cleft Mom Support group on Facebook. She was willing to share her story about her two children, Landon and Mason. Read on to hear her story and what she has learned from raising very special children.

Tell me a little about your family and background, and your first child.

In 2007, I moved to Texas to follow my boyfriend, and friend of 20 years. After officially dating in June 2007, we became pregnant soon after but miscarried. Over the next two years we became pregnant two more times and had two more miscarriages. In November of 2009 we found out we were pregnant again. We were so afraid of another miscarriage! We freaked out about any little thing until we were past 13 weeks. From 13 to 20 weeks we had a wonderful pregnancy; everything was great. At our 20 week anatomy scan our world came crashing down.

My doctor wanted me to be seen in Austin at an ultrasound specialist, so we traveled 3 hours. We had hours of scans done and an amniocentesis. They said our baby boy, Landon, was going to have hydrocephalus, scoliosis, and possibly other problems. They recommended that we have an abortion because our little boy may never live past birth. I am 100% against abortion, so I said no. Throughout the rest of our pregnancy we made trips back to Austin for follow-ups every three weeks. The pregnancy continued fairly normal. Landon was active and aside from what the doctors “saw” everything appeared normal with my pregnancy.

At 30 weeks I went into preterm labor and was hospitalized for 3 days for contractions and pre-eclampsia. I was released but put on strict bed rest. At 36 weeks on April 22, 2010 my blood pressure got to 179/119, and my doctor said that was the end. I was admitted to the hospital and we started prepping for an emergency C-section. Our son, Landon Christopher, was born at 5:42pm, 6 lbs 8.8oz, 19 ¾ in long. He was beautiful and perfect. The doctors took him straight to the NICU after allowing me to kiss him. I didn’t see him again until 11pm that night when a nurse snuck him in by me because I was in tears that I hadn’t held my baby. After just a few short minutes they took him back to the NICU, but first they told me that he was doing great and had no signs of hydrocephalus. The next day he was released from NICU into the normal nursery and we went home on schedule a few days later.

Everything was great, he was a typical newborn waking every few hours, his pediatrician was sure that everything was good. Just before 4 months old he all of a sudden started sleeping for 12 hours at a time, which sounds good except when it’s a “warning sign” to watch for. I called his pediatrician that day and they got us in to see a pediatric neurologist. We again had to travel the 3 hours to Austin. The doctor had us do a CT scan. The next day she called us and told us she wanted to do another test before telling us her diagnosis. We went back a few days later and Landon was sedated for surgery where they drill a hole into his head and measure the fluid pressure, then inject dye to see where it all flows. Landon went into the recovery room and my fiancé went in with him first.

While my two loves were in the recovery room my fiancé’s mom and I were in the family waiting room when the doctor came in. She sat down and put a CD into the computer and showed us the video of the surgery. She froze it on one part and said, “This confirms my diagnosis. Your son has partial agenesis of the corpus callosum and septum pellucidum. He will never walk, talk, or eat on his own. He will only be a 6 month old baby for the rest of his life… but I have another surgery so if you have any questions please contact my office.”

I started bawling and walked towards the recovery room, as my fiancé was walking out I fell into his arms in hysterics. He told me everything would be alright. Three months later we moved back home by the majority of our family. We saw another pediatric neurologist here in Wisconsin at UW Children’s Hospital; he had invented the “quick MRI” where children didn’t need to be sedated. Landon had this procedure done and the doctor told us soon after that the doctor in Austin was wrong. Landon only had a very mild case of hydrocephalus, he didn’t need a shunt, and he would more than likely grow up to be a normal little boy. We still go back for check-ups every 6 months, and as of today nothing has changed. We have a 4 year old son who is starting in 4K this year, he has a few minor issues (he wears glasses and has a few balance issues), but most people would never know we had any problems with the pregnancy or the first years with Landon.

What has been helpful to you in raising Landon?

The Birth to 3 program (early start) was so helpful for Landon. We started the program in Texas and continued it into Wisconsin until the week Landon turned 3. He saw occupational, speech, and physical therapists. They were all amazing and when he aged out I cried. They had become such a part of our lives. He then moved to early childhood at our local high school. He has an IEP in place and it will continue to grow with him. The teachers are amazing. They help with more than just school; they help with all aspects of our lives with Landon at home, in the community, and at school.

So good to hear that Landon is doing well! Now, please tell me about your second child.

We found out we were pregnant again in November of 2013. Everything was GREAT with this pregnancy. I was watched very carefully due to previous complications and being high risk. I had my scans done and everything came back normal--we were worry free. We were going to have another boy, who we named Mason. I was able to thoroughly enjoy this pregnancy. Everything went good, I didn’t develop preeclampsia, and nothing was noted on any ultrasounds. I did have an elective ultrasound done and my sister-in-law and I thought we had seen a cleft lip; however when I asked the ultrasound tech at my doctor’s office they said that there was no cleft lip or palate and they already checked it out. So, we continued with no worries.

I had a scheduled C-section for July 7^th, 2014. When the doctor brought Mason around the curtain she had his face half covered but in my grogginess I didn’t notice, I just saw my beautiful baby boy. I kissed him and he was taken to the nursery and my surgery was finished up. I went into my recovery room and my OB came in and said, “Tina (the doctor who had brought Mason by me in the OR) told you about Mason having a cleft lip and palate, right?” I told him no, she hadn’t said anything to me about it. I started crying because of the unknown, because I was mad, sad, hurt, scared, and every other emotion a new mom already has, on top of the anesthesia and the pain medicine.

I was brought back to my room and the nurses brought Mason in. I was amazed at how beautiful my little cleft baby truly was. It wasn’t very bad at all, but he wouldn’t latch for breast feeding so after about 16 hours of trying each feed to get him to latch we switched to formula. The nurses had never had a cleft baby so they took to the internet to do research, as did I. We went through the learning process together and they were amazing help. When I was released on the evening of the 10^th we had already had an appointment with a speech therapist at Neenah Children’s Hospital. They gave us a special bottle to use (Haberman). It worked out way better for Mason to eat from. We also learned why it was so hard for him to eat; it would be like one of us without a cleft lip/palate to suck from a straw with a hole in it.

We scheduled an appointment to see a cleft team in Milwaukee at the children’s hospital. We went down there and they told us Mason has an incomplete unilateral cleft lip, and complete cleft of the soft palate, and gum notch. They didn’t really tell us too much more, they gave us more bottles, scheduled another appointment for in a month, and gave us pamphlets. The support groups I have found on Facebook have been amazing, my family has been supportive, and my friends have been loving. Everything has turned out ok as of now.

What has been the hardest part about having a cleft lip/palate baby?

When everybody left after I had Mason and I had time to look at him, I cried. I cried for a few hours because I was scared. I was scared about the unknown, I was scared for him and upcoming surgeries, I was mad the doctors didn't see it ahead of time. But at the same time I was happy we didn't know ahead of time so I could enjoy my pregnancy. I was scared about what other people would think of him, and I was already thinking about school and being bullied. Two of my nurses came and talked with me and helped me through this very emotional time, explaining I just had a beautiful baby boy. My emotions were crazy anyway, add into the mix of finding out about the cleft lip and palate and it was enough stress for anybody to want to cry. And it was ok to cry, it was ok to be mad, it was really ok to be scared.

What have you learned from being a mother to special needs children?

To have two boys that are considered disabled has been the most rewarding experience. I feel it has made parenting more rewarding than a "normal" child, milestones that weren't supposed to be made were extra special for Landon and seeing Mason smile and giggle with his little cleft has been amazing. Seeing the way they both see life as so simple makes me realize we as adults make life much harder than it needs to be.

My boys have taught me so much about life, love, and learning. Life is what you make of it; if you never know what you can't do you will be able to do anything. If all you have is love then you really have everything. You don't need anything else to make you happy, as a child or adult.

Just because my boys have (what others see as) something wrong with them doesn't mean they are not perfect to us. We have never acted as if they couldn't do something because of their issue; we tell both our boys they can do anything and be anything. They will NOT be set back because of anything. I want everybody to know that they are normal; they are beautiful and caring children that deserve to be loved like any other child.

I love everything about my boys, their smiles and laughs, the way their eyes light up, their smell, their beautiful fingers and toes, their ears and nose, cute kissable lips, and everything else about them. Landon is one of the most caring little boys I know; he is amazing and gentle with his little brother. Seeing Landon interact with Mason is amazing. I never knew such a strong love until I met my babies!