Please read on..........................
Jacob is my fourth child, and I never really thought much about birth defects during any of my pregnancies. The day after his birth my husband was concerned about his right eye not opening. The Pediatrician tried to alleviate his concerns saying that Jacob had trauma to the eye due to delivery. Before we left the hospital, I mentioned it to the Doctor again, and he said 'it will open when the swelling subsides in a few more days'. He did comment that if it did not open in 2 weeks to bring him to the office. After a week, Jakes eye only opened a quarter, so we made the appointment early. During his visit, we heard the doctor mumble "looks small", and he sent us to the Pediatric ophthalmologist. That appointment was 2 weeks away due to the Christmas holidays.
Well, as you can imagine, all kinds of things were going through our minds but never blindness. (It was mentioned at the pediatricians office but I really think we were in denial.) At the appointment with the eye doctor, he hit us with the news. He was sure Jake had Microphthalmia, but wanted to do an Exam under anesthesia (EUA) to check for cateracts and PHPV, which he explained could be associated with the microphthalmia. I was in total shock and disbelief! My precious, beautiful baby has a birth defect.....he was partially blind.
My husband and I took seperate cars,(he met us at the office after work). The ride home was long (50 minutes), and all I could do was cry. How? Why?What did I do wrong? Dan (my husband),was (and still is) the strong one. He made me look at Jakes deformity not as 'my poor baby', but that we should be thankful. He did have vision in one eye and it was good. They do wonders with artificial eyes, but he will be strong. Dan also pointed out to me if he had to have a deformity, he was glad it was an eye, instead of an arm or leg that can't be fixed as easy. It also eased my mind that not once did he say it was my fault. Something I did while I was pregnant.
Each step in Jacobs treatment has been very difficult for me emotionally. First was the EUA, putting a baby so small under anesthesia, I cried more, and prayed alot. Thats when Jake got his true diagnosis of Microphthalmia with cyst and Coloboma. (Microphthalmia means small eye, Anophthalmia means no eye. The cyst is on the lateral side of his eye, and as the doctor explained is really like a hernia on the eyeball. Coloboma is the absence of part of a structure of the eye. Frequently the structure involved is the iris or retinal pigment epithlium. However, the lids or optic nerve can also be affected. The missing part is usually inferior.) The good news there was no PHPV or cataracts.Congenital cataracts require removal of the lense, and then contacts must be worn.
My next hurdle was the conformers. If Jake had ANY vision or light sensitivity, I was very reluctant to cover the eye. Dan was ready though. It took two months before I was ready to begin.... I had to be psychologically ready, before we finally saw an Ocularist. I must admit now that Elsie Joy is good ,and does great work, but we were in for a long haul with her. Just the drive alone is 2 hours round trip! Then there is the molds that have to be done each fitting. I just kept telling myself its for the best. He NEEDS this done. The thing of it was Jake only cried when we held him down. As soon as the mold set enough, Elsie would let him sit up until it was done, and he would immediately stop crying! So I knew he wasn't really hurting.
Well, 5 conformers later, at age 7 months Jacob really became whole! He got his first artificial eye! Boy, I couldn't beleive the difference, not to mention the comments from strangers. The only real problem that I had was with the public. Before Jacob started his conformers, he was always complimented on being such a beautiful baby, 'but his poor eye looked swollen.' When Jake started wearing his conformers, we just got stares. No one would talk to him or play with him. I didn't let that stop us from venturing out though. There was one elderly lady at the store once though. I can't help smiling, thinking of her now. She played with him for a good 5 minutes before she noticed his conformer, asked what happened then played for a while longer. God bless her! And as you guess since his artificial eye, he is "normal" to the public again. Lots of compliments and playmates at the stores. He is the same little boy as before, but the ignorance of people about others with deformities really opened my eyes.
Jacob is a bright, curious, wonderful, energetic, happy, (too much?)*smile* little boy. I can tell that nothing will stop him in reaching his goals as he gets older. All of my children are a special gift in their own ways.
We were really blessed with four healthy children, and I thank God everyday.
You can conatct me and Dan.by regular e-mail.
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