Always Get a Second Opinion

Mathias is our free spirited, Tahitian dance lovin’ eight-year-old, who was born with bilateral cleft lip and palate (born without an upper lip and without the roof of his mouth), VSD, ptosis, and multiple congenital anomalies. He has severe sleep apnea (causing him to stop breathing in his sleep 60 times a night, bringing his oxygen level to 89% at times).

He’s been admitted into the hospital for over nine surgeries now (which is just the beginning), and is about to undergo more. Now that he is getting older, reconstructive plastic surgery for his cleft and palate are now being planned. His upper teeth and gums are still very much deformed and will be needing orthodontic surgery, as well. Although he has insurance, not everything is covered. Mathias still has a year to go before he starts school, but we’ve already seen and heard the remarks kids can have when they see his appearance. I pray he continues to have the strength and knowledge to know he is unique!

Mathias’ Story

We were super excited when we found out that we were pregnant with our third child. But little did we know the emotional roller coaster that we were on. At our eight-week appointment, we finally heard his first heartbeats in my womb. The nurse practitioner did the ultrasound and said “I’m sorry, I can’t find a heartbeat. This usually means you will miscarry in the next few days.” We couldn’t do anything but accept it. She had me do one more blood test and sent me on my way.

On the ride home, we received a call from her saying that my blood test showed I was indeed still pregnant and that I most likely was experiencing an ectopic pregnancy (tubal pregnancy), and that I should return to the clinic to fill out paper work to have it surgically removed. Once we finished paperwork, an OB doctor came out and said, “Let’s do one more ultrasound, just to confirm.” Guess what? There he was with a strong heartbeat!

Everything was great, up until my sixth or seventh month of pregnancy. I was referred to an OB/ultrasound specialist after results came back saying that Mathias had chromosomes similar to Down syndrome. That day was unforgettable. We met with the specialist, and they explained how he could have Down syndrome/Trisomy 18. On top of that, while performing the ultrasound, we knew when we asked the tech if everything looked all right that something was wrong because she couldn’t respond. The specialist came in and said, “It doesn’t look good at all. He’s short an oxygen vessel, and he has facial features much like an elephant’s trunk.”

How do you respond to that? Later that day, the OB contacted us and advised us that we should go through with a D & C (dilation and curettage, to scrape the uterine lining). They warned us that if we didn’t, Mathias would never make it through the last trimester, and if he did, he would be a stillborn. She gave us a few days to decide what to do. We prayed on it every night. With a second opinion, we decided we wanted to go through with the pregnancy and deal with whatever outcome it would bring, good or bad.

We could not put into words how the last couple months of the pregnancy made us feel. We even visited the funeral home to find out how much funeral arrangements were for a baby that small. Most people at that stage look for what kind of car seat they want, and we were looking at caskets.

Mathias was born on February 12, 2009. When they first showed him to me, I froze. What the specialists saw as an “elephant’s trunk” was his bilateral cleft lip and palate. He stayed in the NICU for about a month due to multiple congenital anomalies.

At three months old, we almost lost him. I woke up in a panic one Saturday morning, realizing I didn’t hear him breathing. I jumped up and ran to his crib, only to find that he was totally dark purple from head to toe. Instead of calling an ambulance, I tried to perform CPR myself, knowing it would take paramedics time to get to the house. Thank God for those classes, as his color started to change. We took him to the ER, where they ran their tests. I remember the ER doctor saying, “It was a good thing you did CPR when you did; his enzymes show that had it been longer, his organs would have shut down.”

He was then admitted to the hospital, with the diagnosis I will never forget: FAILURE TO THRIVE. We’ve been through too much…I was determined for him to never have that as a diagnosis again. Within that first year, Mathias had undergone multiple surgeries, including the revision and reconstruction of his lip/nose and palate (his first TWO teeth came out at just two weeks old!). And now the baby the doctors said would never make it is proving them wrong.

We chose his name, Mathias Quentin, not knowing the meanings until after he was born. This is what we learned: Mathias means “gift of God,” and Quentin means “five,” referring to the fifth member of our family.