One of our twins was born with a Congenital Diaphragmatic Hernia.

twins and Congenital Diaphragmatic Hernia

Author: Lauren Cotter

(Please note: This is part two of Lauren’s story.  You can read all about her rare condition called uterus didelphys (two uteruses) and her twin pregnancy HERE).

Finding out that one of our twins had a Congenital Diaphragmatic Hernia

I will never forget the moment when Ben walked into the room. Tears streaming down his face, unable to compose himself and talk to me.

Evie had been diagnosed with a Congenital Diaphragmatic Hernia (CDH). Her bowel was up in her chest cavity due to a hole in her diaphragm. I later learnt from the paediatrician this is one of the most dangerous conditions a baby can be born with, I was thankful I didn’t know this at the time. Evie was blessed to have some amazing doctors who quickly intubated her and saved her life.

The PIPER (Paediatric Infant Perinatal Emergency Retrieval) team arrived and we managed one family photo before our little girl along with Ben and his mum hurried off to the Royal Children’s Hospital.

twins Congenital Diaphragmatic Hernia and twins
Our first family photo

Newborn twins in different hospitals

I honestly cannot remember the rest of that night. It was such a bitter sweet feeling to have one beautiful and healthy baby with me and one critically ill baby in another hospital. It was also challenging to be separated from Ben.

We did what needed to be done for our girls therefore Ben essentially became Evieʼs carer and I Mayaʼs.

To say that Ben did an amazing job would be an understatement. He was juggling the older two children at home (with the amazing support of both of our parents) and spending all day in at the RCH with Evie, soaking up as much information as possible to relay to me.

By day 3 I was allowed to head in to the hospital to see Evie. At this stage Ben was such a wealth of knowledge, he knew what every line did, every medication she was on and why. Our Evie girl would have lifesaving surgery in a couple of days to push her bowel down and close up the hole in her diaphragm. She was doing amazingly for a baby with CDH.

Congenital Diaphragmatic Hernia surgery and Evie’s recovery

I was discharged from the hospital on the day of her surgery and in Maya and I went to be by her side. The surgery went as smoothly as could be expected and Evie was doing great. The doctors hoped to have her breathing on her own in 4 or 5 days.

NICU was an overwhelming place initially. Constant bells and alarms. But it is funny just how quickly you adapt. NICU became our normal, it became our second home. We were so blessed to have the most wonderful nurses who involved us constantly in Evieʼs care. We applied moisturiser to her lips, changed her nappy and the most special part of all, laid Maya next to her throughout the day. Before we knew it she was breathing on her own with only the help of a CPAP machine.

twins and a twins Congenital Diaphragmatic Hernia

Our time in the NICU and High Dependency Unit

While Evie was very sick in the NICU I would say I had my blinders on and really wasn’t aware of any goings on around me. Our focus was solely Evie and her battle. As Evie got better and closer to going home I actually found our time in NICU more challenging and frustrating. All that was stopping us from coming home was Evieʼs ability to suck feed and keep her feeds down.

Evie was moved to the High Dependency Unit which had its pros and cons.

Congenital Diaphragmatic Hernia twins

We were sharing a room with another couple and their baby son, it was nice to have someone to talk to and who understood what we were going through.

A major con was being asked to leave the room while doctors assessed the other child. I understand this as a necessity and for privacy reasons it is unavoidable. But as a hormonal mother who just wanted to be with her daughter this upset me greatly.

One morning we came into the hospital bright and early to find that Evie had her nasal gastric tube taken out. Ben and I were so excited, it was the first time we had ever seen her face tube free. We were quickly brought back to reality when a doctor politely asked us to leave as they were in the middle of a consultation. We were probably only waiting five minutes to see her, but this hurt me so badly. In hindsight it seems silly.

Home at last

Before we knew it we had a little girl home with us and our reality as a family of six begun. We are so happy to have our beautiful healthy girl at home with us. The pregnancy and birth were certainly all very unexpected and shocking, but Ben and I frequently reflect how we would never have it any other way.

CDH twins


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