We Found Out My Baby Girl Needed A Prosthetic Eye – But Only Because I Trusted My Mum Instinct

Childbirth was a beautiful experience for me. But from the moment I cradled Scarlett in my arms after her first bath, we immediately noticed her right eye looked different.

We asked the pediatric RN that was taking care of her, the midwife, and even my nurse about it. They all said the same thing; it was swelling due to birth trauma.

In the bliss of the moment, we didn’t question their answers. The pediatrician checked her out a few hours later during rounds and proclaimed all was well.

Scarlett ended up being sent to the level two NICU

Again, we asked about her right eye. She gave us the same answer that we had already received. She was almost sunny side up, the eye was so swollen from birth trauma.

Surprisingly, this isn’t that uncommon for births with these conditions. At 27 hours old, Scarlett ended up being sent to the level two NICU in the hospital that I delivered her in.

Long story short, she was experiencing pulmonary hypertension. She ended up on oxygen and was constantly monitored. On her second and third days in the NICU, she loads of progress. Her day shift nurse, Alice, was a RN who had been working in the nursery for 35 years.

Scarlett had a particularly bad hypertensive episode

She helped ease my fears, answer my many questions, and celebrated Scarlett’s little victories with us.Many times over the two days with Alice, we discussed Scarlett’s eye.

She still was not opening her right eye at all. Despite the chaos of the NICU, hypertensive episodes (that scaredus to death), and running back and forth between home and the hospital, we had not stopped asking about her eye.

We still were getting the same answers as before. Alice did finally get Scarlett’s eyelids open enough to take a peek and said she had a tiny eye in there. I had no clue she was being so literal.

There was too much going on for those words to fully register. The next morning, I arrived in the NICU at 7:30, to find Scarlett back on oxygen. Holding back tears, Alice explained that an hour before Scarlett had a particularly bad hypertensive episode.

All I knew, through my tears, was that my baby was blind in one eye

The call had been made to transfer her to the level one NICU at the children’s hospital a short drive away. Once we were settled in at the new hospital, we were informed that Scarlett would have a consultation with a pediatric ophthalmologist.

Alice had come through when she called in the transfer orders. This amazing lady knew how badly we wanted answers about Scarlett’s eye.

Two days later, we finally met Dr Rama.After the initial consult, Dr Rama explained that she was bringing in a portable ultrasound machine to take a closer look at the eye.

We were still in the dark but we knew answers were coming. After the ultrasound, the world is a blur. There were a lot of big words that I did not understand. All I knew, through my tears, was that my baby was blind in one eye and would require a prosthetic eye. I also knew that she was a proven fighter.

I asked again for the names, reining in my hormones and emotions as I spoke. Persistent hyperplastic primary vitreous, micropthalmos, and a full white cataract.

Dr Rama grabbed my hand once my tears started again and told me there would be nothing that Scarlett couldn’t do.

Do not ever stop asking questions when you feel something is off

Once Dr Rama left, the googling began. I had to ask the nurse how to spell the conditions. When I searched for PHPV, all I could find was medical articles that were like trying to read a foreign language.

Mircrophthalmia (which is basically a smaller than normal eye or eyes) and the cataract were a bit easier to find information on in layman’s terms.

I spent the next two months wading through medical articles trying to decipher what exactly it was that my baby had. I would give up, then a few days later be right back at it. When Scarlett was two months old, I found or was directed to a few groups online.

Then, I learned that PHPV had another name! PFV or persistent fetal vasculature. My Google searches opened up a little and I beganto learn more information.

I learned that is it a condition where the eye does not develop properly in the womb. It’s a rare condition. It is also common for these three conditions to occur together, although, they can occur separately.

I learned all I could about eye prosthetics. I was absorbing information until I just could not take any more in. What I am here to tell you is do not ever stop asking questions when you feel something is off. Our persistence in asking led to a nurse taking an extra look.

Well, you have just read where that led to so I won’t go on. Just don’t give up because you get told that it is “normal.”

Trust your mom/dad instincts and ask again and again.

Also read: 

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