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Real life story: A fight for survival following twin-twin transfusion syndrome

Updated: Mar 13, 2023

In this blog, we feature the story of dad, James, and his partner, Laura, whose baby twins suffered from this rare condition.

Méabh and Clodagh are the gorgeous baby twins of parents, James and Laura. Méabh means 'the cause of great joy in Irish' (and is pronounced 'Mayve', and Clodagh is pronounced 'Clohdah'). Méabh started out life outside her mother at a tiny 1lb 7oz and her sister, Clodagh, weighed just 2lb 9oz after an emergency C-section. Laura was admitted to hospital earlier in her pregnancy (at 22 weeks) and received essential laser surgery for the twins. Laura was then in hospital for a further 6 weeks before having a caesarian. Whilst there are normally weight differences between twins, they are not so pronounced.

The girls were born with Twin-twin Transfusion Syndrome (TTS) Stage 3. Stage 3 is a stage of cardiovascular dysfunction where the imbalance of blood flow begins to affect one of the twins. There are 5 stages in total.

What is twin-twin transfusion syndrome (TTS)?

TTS is a rare condition that can occur in identical twins at random. One twin, the donor, gives more blood (from the placenta) to the other twin than it receives in return. The other twin, the recipient, receives too much blood and is at risk of overwork of the heart and too much blood volume (further information can be found here). At this early stage of growth, babies are not ready for either too much, or too little, blood and the organs of both twins are negatively impacted and require urgent medical support.

Because the babies were born so early and were fragile, their parents couldn't touch them until day 3. But on day three they could have their first cuddle.

Méabh and Clodagh developed at different rates. Clodagh, was ready to be released from hospital first. After 63 days in hospital, Clodagh was able to be taken home after spending 9 weeks in NICU on the 5th of December, 2022. Clodagh was able to meet her older brother at home and settle into family life. It was very difficult for James and Laura as a family because whilst Clodagh was home, they had to leave Méabh at the hospital for essential medical care.

Méabh was finally able to go home on Christmas eve of 2022 after 82 days in hospital.

What was needed to be able to take Meabh home?

For her to be able to go home and be reunited with her twin sister and family, the doctors needed Méabh to stop "desatting." Desats is is a medical term used to mean that saturations (oxygen levels) are dropping. Babies in NICU usually have their oxygen levels monitored (sats) by saturation monitor so that medical staff can be respond if sats fall below a certain level. Sometimes babies can raise their saturation levels, but often they need assistance. It's dangerous when babies desat because the cells in the body do not get enough oxygen. This means that they do not have energy and that baby's developing organs may not grow and may be damaged. As well as her O2 levels, medical staff also needed Méabh to be a healthy weight. She had grown to be 1.8 kg (just over 4 pounds) when she could finally go home.

The parental experience of having new born babies in NICU for many weeks

It's been a very frightening and stressful time for parents James and Laura where the lives of the twins have been at-risk. Initially, the premature babies needed intensive medical support.

Laura described:

"Premature babies are not just small, full-term babies that need to grow a bit more, there are several complications premature babies can have. You can walk out of the NICU one day after having a good day and return the next morning to a team of doctors around your baby.

Despite the high-risk pregnancy nothing could have prepared us for this journey. I didn't think I was having the twins until we started prepping for the C-section scared that our babies wouldn't survive, especially Méabh as she was extremely small for a 28-week baby."

As well the length of time in hospital, it was understandably an incredibly stressful experience for James and Laura.

Laura explains:

"When Clodagh got home, Méabh was battling a pretty nasty infection and was in bad way in hospital. We couldn't easily access her as we couldn't leave Clodagh with anyone or bring her into NICU. After 3 days, Méabh got moved into a side room in the hospital and Clodagh was allowed in to see her. Méabh's main issues were her low weight and difficulty tolerating feeds, she had several instances of suspected NEC."

What is NEC?

Necrotizing enterocolitis (NEC) is a serious gastrointestinal problem that mostly affects premature babies, it is life threatening. The condition inflames the intestinal tissue, causing the tissue to die. A hole (perforation) may form in baby's intestine. Bacteria can leak into the abdomen (belly) or bloodstream through the hole. Laura explained:

"To be honest, I don't think we did cope well, we were a mess. Every time the doctors thought that Méabh had NEC I thought we were going to lose her. My partner and I tried to alternate visiting at weekends so we both spent time with our son, we were rarely in the Unit together. Now that both twins are home, I think the reality of what happened is only just hitting us now but we love having them home."

What has helped James and Laura to cope?

"Support from my family really help us as a family to cope. When I called to tell them my waters broke they were straight over and got my son sorted so it was one less thing to worry about."

We get a lot of support from a group TinyLife here Northern Ireland, they provide baby massage classes and a "tinygym" which has a Physiotherapist there who assesses the girls monthly. Speaking to other NICU mums also helps as they know what you have been through. I think a support group during and after NICU would be so good and more help with mental health because they have been through the same thing."

How are the twins now?

The twins are now home with James and Laura and their older brother and going from strength-to-strength.

Congratulations to James and Laura on their growing family. James and Laura generously wanted to share their personal story so that other parents of twins with TTS have hope that things can get better.

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