Ruby’s and Scarlett’s story

Hanna's tough twin pregnancy

We found out we were having twins at an early scan at the fertility clinic. We were delighted and nervous to be having more than one baby. However, we quickly became aware of the complications of twin pregnancy and were diagnosed with twin-to-twin transfusion syndrome at 16 weeks. 

At 17 weeks, we had in utero surgery to correct the blood flow to the babies. Unfortunately, this resulted in PPROM (Preterm Prelabour Rupture of Membranes), leaving very little fluid around my babies. From this point, we knew a NICU stay would probably be our best outcome.

Premature birth of Ruby and Scarlett

Scarlett and Ruby were born by emergency C-section at 27+2 and admitted to the NICU on ventilators at King’s College Hospital. Ruby was 750g and overcame suspected NEC  (Necrotising Enterocolitis, a severe intestinal disease) and meningitis, working her way through the High-Dependency Unit (HDU) and Special Care Baby Unit (SCBU) and coming home still tiny but without home oxygen. 

Ruby came back into the hospital with me almost every day until her sister could come home too, seven months later.

Scarlett’s fight for life

Scarlett weighed 1kg at birth - just as much as a bag of sugar. Scarlett had a much more difficult journey than her sister. 

She was treated for a collapsed lung in her very early days of life. After many treatments to close the hole in her heart, it finally worked. Just as we were about to turn a corner, she contracted Serratia sepsis that left her fighting for her life. 

Those were the most nerve-wracking days. Scarlett’s platelet numbers and infection markers were very concerning. We had to take it one test result at a time with no idea what the implications on her future development would be. She had to have a port inserted in her neck for the antibiotics because cannulas were becoming so hard to place. She was too ill for me to hold. That was the hardest thing.

Trying to be in two places at once

As Scarlett slowly started to recover, I was facing the unique challenge as a parent of multiples in different rooms and at different stages.

I was desperate to hold Scarlett whenever I could, but I was also trying to support Ruby in a 3hr feeding routine in SCBU; to be there to dress and change her and enjoy all the firsts we could have with her. 

I was trying to be in two places, express breastmilk, eat, and hydrate. It was a huge challenge. The support I received from the neonatal staff who understood this challenge and came to find me in the other room to keep me informed was so important.

Just as we thought Scarlett was improving,  her "SATS" (oxygen saturation levels) became very concerning. She had to be treated for pulmonary hypertension, another scary bump in the road. She still had the consultant's full attention.

We read to her and held her hand. We drew a lot of comfort from the other parents on the neonatal ward. Soon enough, we were able to cuddle her again and gave her her first bath. After multiple failed extubation attempts, she pulled her vent tube out herself and stepped down to a CPAP machine (Continuous Positive Airway Pressure, helping premature babies breathe). 

After three months, she was the healthiest baby in the ICU and moved to the High-Dependency Unit (HDU).

A scary diagnosis for Scarlett

The hope was to progressively reduce her breathing support in HDU, but she just could not get off Optiflow (respiratory support). A scan revealed she had severe damage to her lungs. Scarlett was diagnosed with chronic lung disease. This sent us down a pathway of learning to use a non-invasive ventilator she could use overnight at home. 

We also needed to have a feeding tube surgically attached to her gut so she could use a feed pump to protect her lungs from reflux. 

We applied for a care package to give us some overnight support with the ventilator when we returned home. While I was devastated that she would need support to come home, it provided us with some clarity for our next steps. We focused on what was ahead.

We eventually moved to the Paediatric Intensive Care Unit (PICU) to await her feeding tube surgery. We prepared for our transition home. We could not wait for Scarlett to visit our local park and have more space to play with her sister while she grew stronger. 

A WellChild nurse helped us enormously with our transition home. We completed training in using Scarlett’s pump, her medications, ventilator and what to do in an emergency.

Coming home

300 days after Scarlett and Ruby were born, they were reunited at home. Scarlett’s challenges meant she had lots of follow-up appointments, but her sight and hearing were thankfully unaffected. 

Scarlett lives with Cerebral palsy, and with help from early intervention physio and occupational therapy, she is now walking, talking and generally keeping up with her sister's antics. 

We are now looking for a mainstream primary school that they both can attend together.

Joining Ickle Pickles to give back

When I felt it was time to return to work, I joined the Ickle Pickles Children’s Charity to support other NICU parents, neonatal staff and neonatal units. Being in NICU is a tough challenge, and I am really pleased to be able to offer peer-to-peer support and help fundraise for essential neonatal equipment, from simple things like reclining cuddle chairs that help make parents’ days better to incubators that help save babies' lives.

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