Gunnar with his mom
Our story began in September of 2003,after my husband and I married in June we were shocked but excited to learn we were expecting another child. I had a 9-year-old son and 5-year-old daughter from a previous relationship and he had 3 daughters 8,7 and 5.
The excitement grew as we learned in December that we were having a BOY :) My son was thrilled as any boy with 4 sisters would be!
I continued with regular appointments, and had no issues with the pregnancy. On a normal visit in March of 2004 a fill in Doctor was there, I had no idea my world was about to collapse around me. The appointment was going well when he asked "So are you going to the specialist for stress tests?" Before I could even respond he said "I'm surprised you've made it this far really" ...I couldn't speak, I had no clue! He noticed the shock on my face and asked "Nobody told you?" I asked "told me what"-he went on to explain the "boney" abnormalities found and the extensive heart defects. I was speechless. He gave me the number of a high risk Dr. Two days later the journey began, stress tests, amnio, blood work, ultrasounds..it was never ending! They planned an induction for April 20th because they didn't want me going into labor and not being close to Childrens. That morning we met with many doctors. They explained their plans, then one looked over at my husband and I as I held my sons diaper bag and shook his head, I asked "what was that about" he paused then sarcastically said "maybe you don't understand these babies DON'T live"... I stood up told him I needed him to leave-I wouldn't have his negative attitude near my son or myself. He left and the induction began. At 9:23pm Gunnar Henry Martin was born weighing a surprising 5lbs 11oz,and he cried this weak little cry. He was immediately taken to NICU where he was released to the regular nursery within 4 hours!! After 48 hours he was released from the hospital. I asked this "Doctor" who believed "these babies DON'T live" to be the one to discharge my son-and he did with his head hung in shame.
We went immediately to Cardinal Glennon to begin our journey with Orthopedics and Cardiology (as well as opthamology,ENT,genetics-where we learned his diagnosis of Trisomy 10 and gastro). Gunnar was started on Digoxin, and began a barrage of tests.
On April 19th 2005 he was scheduled for surgery to repair heart defects. As he was born with 2 ASDs,VSD and PDA. He did AMAZING!! Not a single issue. I think I cried from the second they took him from my arms until I held him again! He continued to do well and he was cleared to begin his orthopedic journey.
We were referred to one of the top hand surgeons in our area-who began serial casting and "pinning" where rods were placed in his single forearm bone (as he was born without a radial bone or thumbs) to correct the curve due to the lack of the radial bone. Things seemed to be going well but I contacted Shriners Hospital of St. Louis for more help. He was scheduled for an appointment. We went in to his current ortho to have the rods removed a week before his Shriners appointment. This was one of the worst days of my life-as we sat in the office thinking Gunnar would be put out to have them removed. The Dr. sat down with a pair of pliers and yanked them out-NO medication or anesthesia!!! I was livid!!! Yet Gunnar was my only concern! On our first Shriners visit it `was found the bone had been broken when he pulled one of the pins. The doctors were amazing, they explained so much. They treated Gunnar as if he was their own family! He has had 36 surgeries there, some minor and some major. We've spent weeks at a time there. Yet Gunnar is thrilled every time he walks through the doors!
Gunnar will be 8 soon and I only recently started to research his condition-I guess I was too afraid before. When I read this and the comments make sense yet they don't understand-they haven't carried a child, they haven't felt that life grow then have someone say "these babies just DON'T live".....because of what they've read! Well I say this-you may know books, you may know the risk, but what you have forgotten is the power of Love, the power of prayer, the will of a child and the gifts from God!! My son surpassed everyone's expectations!
I won't say this journey has been easy, that would be a lie! Every time my son was taken for surgery I cried hysterically. Thank God for the amazing families I've met through Shriners, without them I don't know I could have handled it all. I became pregnant again in 2008 and my fears were brought to the surface and the testing began again, Luckily Jackson was completely healthy. Unfortunately, when Jackson was 3 months old I had to begin the process with Gunnar of another surgery and long hospital stay and this was SO HARD! My other children were older and although we cried every night talking on the phone wanting to be together, they were old enough to understand where I was and why. He was just a baby and needed his mommy, and I couldn't be there! It broke my heart. I felt so much guilt. I still do, but I know I had to do what was needed for Gunnar also. We've struggled with decisions for Gunnar but things have always turned out for the best.
Gunnar is now in 1st grade and doing well in school although he isn't quite at everyone else's level. He continues to thrive.
I've met some amazing Trisomy parents through face book (Trisomy Mommies) who have been such a great support and inspiration! As well as CHD moms who have been there and become like a second family. One Trisomy mom helped us to get Gunnar's new glasses when we were having problems getting them. One CHD mom has been there for me at any time to talk about anything! These women are so amazing and I honestly would be lost without them!
All I can leave with you is this- Doctors know books, Trisomy moms know MIRACLES <3 Never give up hope! I hope Gunnar's story can help someone, I know HE has helped me. Without him I wouldn't be where I am today. He has been my heart. This year he decided for CHD awareness to take heart stickers to school for his class (most of which were wearing RED for him) and when asked he explained, "the hearts are to support all the other broken hearts like his"
He has such a loving soul; I couldn't imagine my life without the light he brings into it!
to Rare Trisomies, Ring, and Deletions
-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.