Life after ROP - Gigi's story

Gigi 5

Gigi gave birth to Alejandro at 24+1 weeks. At two weeks old, after a failed surgery, Alejandro lost his sight.

How heavy is 1lb 4oz? It is the same weight as a basketball. It is as heavy as three hamsters. It is less than a loaf of bread. It was the weight of our new born son.

I was only 23+5 weeks pregnant when I experienced a premature rupture of the membranes (PROM). I was quickly hospitalised at Chelsea and Westminster Hospital and lost almost half of my amniotic fluid.

I vividly remember being afraid and praying over and over and over, like a broken record, “God – please don’t let him die, please let him be ok”.

When the ultrasound technician mentioned that babies can replenish some of the amniotic fluid they lost by peeing, I felt slightly relieved but still nervous as I was now increasingly fearful of developing an infection now that my amniotic sac had been compromised.

For three days I was bed bound at the hospital and received three doses of steroids to help my baby’s lungs mature in case I went into early labour. Every day for those three days, a stream of doctors would come in and deliver horrible statistics about how dire it would be for our baby to be born now as he wouldn’t be viable and how crucial it was for him to be able to make it to 27 weeks because then he would have a better chance of survival. Getting to 27 weeks became my goal but that was over three weeks away. I was hoping I would make it but I wasn’t sure.

On the fourth day, my baby’s stats began to deteriorate and he had moved into a transverse breech position. I had become septic and so the decision was made to perform an emergency c-section within 30 minutes. I was 24+1 weeks - I didn’t reach the magic 27 weeks. I felt like such a failure.

"He’s very small and we’re not even sure he will make it but at this point, he’s better out than in," the doctor told my husband Jesús and I.

He added that I may lose a lot of blood and turned to my husband and asked him, "If it comes to losing your wife or your child, who do you want to save?"

"Hello!" I said, "I’m still here in the room and can hear you. Save us both!" What a dreadful question.

The next few hours were a blur as specialist after specialist came in to again rattle off their dire statistics of a child being born at 24 weeks. We were totally petrified.

During delivery, four medical teams were present - OB team, surgical team, anaesthesia team and NICU team. They delivered our baby and immediately whisked him away to work on him. He didn’t and couldn’t cry. I remember the anaesthesiologist standing at my head whispering, "He’s so tiny."

My husband stared at me - both of us were in shock and afraid of what the next second would bring. After what seemed like an eternity and while they were still working on closing me up, someone tapped my husband on the shoulder and said, "You can see him now Dad."

"He’s alive," I thought, "If he wasn’t, they wouldn’t have called Jesús over to see him, right?"

We named our tiny but beautiful son Alejandro on his second day of life. He was four months early and a name hadn't been picked out so for his first day here on this earth, he was "Baby Boy Fernandez-Khonyongwa".

There are so many complications when you give birth so early. During his six month stay in NICU Alejandro battled illness, infection and complications.

He had a very low Apgar score and had to be resuscitated countless times at the beginning and middle of his NICU stay. He was immediately placed on a ventilator to help his breathing. He was diagnosed with Bronchopulmonary Dysplasia (BPD) in his lungs. He remained on the ventilator for three months, which is an incredibly long time to have a machine breathing for you. His left lung collapsed as a result of the treatment.

Alejandro also had Patent Ductus Arteriosus (PDA) – an unclosed valve in the heart. This was treated successfully with medication.

Then we almost lost him to Necrotising Enterocolitis (NEC). This is a diagnosis that every preemie mother fears. NEC destroys a portion of the intestines and is potentially fatal. Alejandro did not present the typical symptoms of NEC so it took the doctors a long time to diagnose him. He required emergency surgery to remove the damaged intestines. He had a colostomy bag put in place and eventually had surgery for the resection of his intestines.

Alejandro’s eyes were checked regularly from the second week of his life and he was soon diagnosed with Retinopathy of Prematurity (ROP) and rush disease. His retinas had detached so he was transferred to Hammersmith and Fulham Hospital for laser surgery. The surgery was unsuccessful and his surgeon bluntly told us, "Your child is blind."

Alejandro’s NICU stay elicited a range of emotions from us. At times we were upset, angry, confused, traumatised, joyful, panicked, happy and fearful – it felt like we were on an endless emotional rollercoaster that wouldn’t stop. We were dealing with a very scary world of unknowns that was now our new normal.

We were discharged after five and a half months in NICU. Alejandro weighed 4lbs which we thought was huge! We were so ecstatic but exceptionally nervous. We wondered whether we could really take care of this tiny human without the constant support of Alejandro’s NICU aunts and uncles – his doctors and nurses. We didn’t sleep a wink that first night – we just hovered over our son to make sure he was still breathing.

Even though we were out of the NICU, Alejandro’s time in hospital was far from over as he was in and out for retinal surgeries and check-ups which continue to this day. We found a paediatric retinal specialist in the USA – where I am from – to take care of his eyes. In the years that followed, Alejandro had multiple vitrectomies and lensectomies on his eyes and retinas to try to save some of his sight. He became ill with Respiratory syncytial virus (RSV), post-op, while in the hospital in Michigan for his first surgery and had to be admitted for six weeks. We were heartbroken because we almost lost him again.

During his first year of life, Alejandro continued to have retinal haemorrhaging and increased pressure issues which led to more surgeries. Even now, he continues to see his retinal surgeon every three to six months in order to maintain the health of his eyes.

We left the UK when Alejandro turned two-years-old to be closer to his eye surgeon. The transatlantic travel had become too much for us. He started pre-school at Lighthouse International in New York, a school where half the student population were blind or visually impaired and other half were fully sighted. He loved it there and began to learn how to read Braille and use a cane.

When he turned five, Alejandro started first grade in a mainstream school of approximately 700 kids. He was the only blind child there and became somewhat of a celebrity among his peers!

Alejandro is an incredibly happy, smart and funny little boy who never lets his blindness hold him back from achieving his dreams. He plays the drums, violin and piano and loves reading books in Braille. My husband is Spanish so Alejandro is also bilingual.

Alejandro has so many wonderful talents, it is easy to forget that he had such a difficult start to his life. We want him to stay happy and be confident and secure in using all of the many gifts God’s given him. My son is now 10-years-old and had more retinal surgery on what he calls his "special eyes" this summer. He is a real survivor and an inspiration to all who know him.

Gigi's story was shared in the latest issue of our magazine, Little Bliss. The magazine is packed with real stories dealing with life on a neonatal unit and beyond, advice from other parents and health professionals, all the latest news from Bliss and lots of ways that you can get involved and support premature and sick babies and their families.

If you have been affected by any of the issues mentioned in this post and would like support, view our online support pages.