How Sarah Became Our Little Pirate: The Beginning of Our Journey With a Congenital Cataract

This story begins almost 4 months ago.  After Sarah was born, I spent lots of my time staring into her beautiful eyes. When she was around 2 weeks old, I noticed that her right pupil didn't look quite normal. It was a little bit cloudy.  I hoped that maybe it was just part of her immature eyes adjusting to birth and it would go away, but it seemed to be staying the same.  She had been examined and cleared by multiple doctors before we left the hospital, so I figured it couldn't be anything too serious.

If you look closely at this picture from the day we brought her home, you can see that the top half of her right pupil is white.

 When her eye still looked strange by her 1 month appointment, I asked her pediatrician about it. At first, the doctor couldn't even see the spot in her eye, and I had to ask her to look again. She said it was probably nothing serious, but she got us an appointment with a pediatric ophthamologist for the next morning. I figured we would just sit in a chair and the doctor would shine a light in the baby's eyes and look at her.  Wrong. It was awful. First they dilated her eyes, and we realized there was a problem when her right eye wouldn't dilate normally. Then, the doctor swaddled her really tight and had me hold her down while they clamped both eyes open, examined her, and took pictures. I have never heard her scream so loudly. She had to get her blood drawn too. We were both entirely traumatized by the time it was over.

This is a picture of Sarah's eye from that day. The white half-circle that you can see over part of her pupil and iris is a congenital cataract. We don't know what caused it, but it developed before she was born. It is like a scar on the lens of her eye. Some babies are born with such severe cataracts that they have to be removed surgically within days of birth. The problem with cataracts in babies is that if they can't see well out of one eye, the brain can stop using that eye, and they lose vision all together. Fortunately, Sarah's wasn't blocking the center of her vision, so we could afford to wait for a while. We started by treating her twice a day with dilating drops to try to stretch the pupil and break up the scar tissue.

The day that Sarah was diagnosed with a cataract was rough for me. My perfect little baby had something wrong with her that could affect her whole life. I couldn't help thinking that it had to be my fault somehow. Fortunately, my mom was here that day.  It was her last day in Hawaii, and it was a great blessing that I had her with me.

Fast forward to two months later. We had become pros at putting eye drops in Sarah's eyes, but it didn't seem to be making any difference. We went for our follow-up visit with Dr. Nemmers, and we got bad news. The cataract was blocking her peripheral vision, and her eye was already becoming lazy. That meant it was time for surgery. Dr. Nemmers would go in and remove the cataract, which would require removing the natural lens from Sarah's eye. Normally this is followed by placing a synthetic lens, but most babies are too small to fit a lens.  This meant that Sarah would have to wear a contact lens, possibly in addition to glasses for the next couple of years until she was big enough for an artificial lens. In addition to that, we would have to put a patch on her good eye for several hours a day, possibly for years, to allow her bad eye to get stronger. The more research I did, the more depressed I got.  That was another bad day.

In the 3 weeks between that appointment and Sarah's surgery date, I worried a lot, prayed a lot, and second guessed myself a lot. Were we sure it was the right thing to put Sarah through all this so early? Did we need to seek second opinions? If we had enough faith, couldn't Heavenly Father just make Sarah's cataract go away? As I was worrying and pondering one morning, I received a very powerful spiritual impression that one of the reasons we had been sent to Hawaii at this time was that the right people were here to care for Sarah's needs. She was in good hands, and she would be okay.

After that, I felt better. I still worried, and I still prayed that if possible Sarah could be healed and avoid this trial, but I also knew that we were in Heavenly Father's hands.  The night before the surgery, our neighbor came to help Kelson give Sarah a priesthood blessing. She was already asleep, so we all quietly went into her room, and the men placed their hands on her tiny head while she slept peacefully in her crib.  They blessed her that all would be well and that she would recover properly from her surgery.  Kelson had given her another blessing shortly after her diagnosis that she would grow up with fully functioning senses. We all placed our faith in Heavenly Father and went to bed to prepare for what we knew would be a stressful day.

We had to be at the hospital at 6:00 AM to check in for Sarah's surgery. She wasn't allowed to eat after 2, and she was not pleased at the lack of breakfast that morning. We had a very unhappy baby on our hands for the couple of hours between the time we checked in and when it was finally time for her to go in.  Blessedly, she fell asleep about twenty minutes before her surgery. It was much easier to hand a sleeping baby over to the nurse than if she had been crying.  She even reached her little hand up in her sleep as we handed her over, and Kelson gave her a high five. That was a tender mercy for the morning. We left her in the capable hands of the surgical team and went to the waiting room for two anxious hours.  It was a great relief to see Dr. Nemmers come out to get us.

Going into surgery, the best news I was hoping for was that she was big enough for a lens implant so that we wouldn't have to do contact lenses. I was very pleasantly shocked when Dr. Nemmers told us the good news that they had been able to carefully peel away the portion of the cataract covering Sarah's pupil without removing her lens.  Amazing! Her natural lens will allow her better sight than an artificial one would, and it means fewer procedures in her future and less trauma now.  It was a miracle. Heavenly Father didn't take her cataract away, but he did make it possible for it to be removed in the least traumatic way possible. It was an answer to our prayers and to those of many friends who had been praying for little Sarah. We were very grateful. 

 Sarah was pretty sad and hungry when she came out, but she went right to sleep after finally getting her delayed breakfast.

She snoozed while we waited at the hospital for the next hour or so just to make sure she was okay coming out of anesthesia. Before long, the iv was removed, we were handed a huge bag of medicine, and we were on our way home.

 My sister, Katy, had major back surgery when she was in middle school. During her surgery, a child life specialist at the hospital gave Katy this stuffed elephant to keep her company. She passed it on to Sarah to take care of her.

 It is amazing to me how resilient Sarah is. She was pretty sleepy and grumpy for a few hours after surgery, but by that evening she was smiling and ready to play.

 Sarah had to wear the eye shield for a week to keep her from rubbing her eye while it healed. She is also getting eye drops about ten times a day as well as oral antibiotics.  We have had some grumpy moments, but overall she is her happy self.

 Personally, I think she totally rocks the pirate look.

 A week after surgery, we had our followup appointment. Her eye was healing nicely, she was cleared to get rid of the eye shield.  We were pretty happy about that.

 Unfortunately, she wasn't patch-free for long. That was our first day of patching her good eye.  She keeps the patch on for 3 hours every day.  I am counting my blessings that she doesn't know how to peel it off yet. That will be a whole new battle.

Kelson's sister, Pam sent Sarah a parrot.  Now she is a legitimate pirate.

I wish we could say we were home free with Sarah's eye, but we are just getting started.  During the surgery, they discovered that Sarah has abnormal vasculature associated with the cataract that is causing glaucoma.  We are treating that with drops for now, but she may need surgery in the next few months.  She is on three kinds of eye drops and two eye ointments, so I am giving medicine all day.  I am very grateful for my education as a nurse.  It has made this experience much less scary for me.  As much as I would never have wished this trial on Sarah, I know that we will make it through. Thanks to amazing technology and a skilled surgeon, Sarah should have pretty good vision.  We are very blessed.