Rowan's Cleft Lip surgery is scheduled for December 19th, 2017.
Our beautiful, precious baby boy, Rowan Harrison, was born with a unilateral cleft lip and palate. This means that he has a gap on the right side of his lip that travels up to his nose, and on the inside roof of his mouth. There is no cause of cleft lip and palate. It is a random occurrence that happens during the earliest weeks of pregnancy when the baby's face comes together and it fails to completely merge. Cleft lip and palate is the most common birth difference, and happens in 1 of 700 babies. Thankfully, it is also one of the most repairable and easily fixed issues that could have happened. Rowan will be able to have surgery to repair his lip as early as 3 months old, and have surgery to repair his palate once he's a little older.
When Rowan was born, he was having feeding issues, which we thought was due to his cleft lip and palate. They tried to place a feeding tube and discovered that his esophagus was not connected to his stomach. He was flown to Cooks Children's in Fort Worth for an emergency surgery. Rowan was in the NICU for 17 days.
Rowan had surgery at 4 days old to repair and connect his esophogus to his stomach.
Rowan is now scheduled for his cleft lip repair on December 19th, 2017.
His Palate surgery will be a little later when he is about a year old.
We still have a very long and hard road ahead of us and we're tying to raise funds to support his many surgeries and medical bills. If you can’t donate, please share Rowan’s story to help us spread the word!
We really appreciate your love and support! Thank you!
Rowan Harrison Golden
20 inches long
Today, we had an appointment with a Cook Children’s geneticist, and they confirmed what we already knew. Rowan’s tests came back normal, he doesn’t have any missing chromosomes or anything.
But we have something to share. With all of the amazing and thoughtful generosity for Rowan’s Go Fund Me campaign for his cleft lip surgery, we feel that we need to be completely honest about his condition.
This is something that I’ve been too scared to put out in the world. But I’m not at all ashamed of my son, and writing about and sharing his journey is helping me to cope with the difficult circumstances that we have already and will continue to go through. Rowan has VACTERL Association (also known as VATER). This is not a syndrome, but a collection of birth differences, that when they happen together, are considered an “association”. Scientific study has shown that there is no cause of VACTERL, it is a random occurrence and it is not genetic. Each letter of the name VACTERL stands for a different anomaly, and when a baby has at least three of the anomalies, that baby is considered to have VACTERL. Rowan has a total of 5 out of the 7, and is referred to as having VacTERL (the lowercase letters are those that do not affect him).
Rowan has some slightly irregular shaped vertebrae in his spine and a few missing ribs. He also has TEF/EA, which he had surgery to repair when he was 4 days old. Rowan has two cross-fused kidneys (we originally thought he only had one kidney), and he was also born with an extra thumb on his right hand (polydactyly). Rowan’s cleft lip and palate are assumed to be associated with his TEF/EA.
V - Vertebral anomalies
A - Anorectal malformations
C - Cardiovascular anomalies
T - Tracheoesophagal Fistula
E - Esophageal Atresia
R - Renal (Kidney) and/or Radial anomalies
L - Limb defects
This is a list of Rowan's past and upcomming surgeries that we are currently aware of. Other surgeries will probaby be needed.
7/26/17 - TEF/EA (esophegeal) surgery
12/19/17 - Cleft lip repair, forehead cyst removal, ear tag removal, ear tube placement
1 year old - Hand surgery, palate surgery
8 years old - Bone graft for gumline
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