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Rosina shares the story of her daughter, Fatima aka “Mily”, and their journey with cloacal exstrophy at Children’s Hospital Los Angeles. 

When Fatima was born, her mother, Rosina, had no idea what to expect. She had dreamed of having a fourth baby, but this pregnancy was high risk; Rosina was diabetic and had previously suffered a miscarriage. “She’s always been a miracle. Every day I would just thank God and count my blessings because my baby is still here with me. I feel that everything happens for a reason.” Rosina always wanted to name a child “Milagro”, which is Spanish for “miracle”. Her husband named their first three children, and it wasn’t until their youngest was born that the name fit: “Not until Fatima. I call her Milagro [Miracle], “Mily” for short”.

Fear & Uncertainty

An experienced parent, Rosina could tell when her 5-month ultrasound was taking longer than usual; soon after, her baby was given the diagnosis of Cloacal Exstrophy. “It was a real shock to say the least. Something hard to comprehend. We had hoped and prayed for a baby. And then to find out she was [going to be] born with this condition. Not knowing if she’d survive and the feeling of helplessness because there was nothing I could do…. I felt bad. I felt really bad. I was in shock…. To be honest I didn’t know how serious it was. It was a diagnosis made during an ultrasound, so I almost didn’t accept it. I truly prayed and put my faith in God.” Despite her strong faith, Rosina struggled to find peace with her daughter’s complex diagnosis.

After delivery, Fatima was transferred to CHLA. The initial separation from her baby was overwhelming for Rosina.  “When I was healed enough to finally see her at Children’s Hospital I was informed of the whole situation and the plan. To be honest I was in shock. I couldn’t think straight. I felt really bad and everything was hurting. When I think back, the whole situation seemed like I was in a dream. I didn’t know what to think or do.” With time, came more understanding of Fatima’s condition: “[CHLA] took really good care of my girl, and I love that. The knowledge and information on [cloacal exstrophy] came with more time at the hospital, as well as being told of the next steps [and] plan for treatment.”

Learning to Navigate Mily’s Condition

Fatima’s first year was a challenge, as her family learned to navigate the medical world and cope with her needs. “She was 5 months [old] with her bladder outside. CHLA sent a nurse to my home to teach me how to care for her. I was not sure that I could do it, but [in the end] I was able to take care of her and make sure nothing happened to her. It was painful to see her, but I was determined to take care of my baby girl. After five months, she had surgery to close of her bladder.” 

 “She ended up getting pneumonia post-surgery due to the flu. And infection of the lungs…I thought she wouldn’t make it because she couldn’t get oxygen. But CHLA did everything to keep her alive. She was in ICU for 1 month, with a breathing tube. But like I said, I believe she is my miracle because she’s been able to overcome so many things, and she is still here with me.”

CHLA Offers Hope

“I really liked that the surgeons were being thorough and having multiple ultrasounds and tests done to make sure that everything went well. And it really did! She just had surgery June [2020], and just a week later she was up and about like nothing had happened to her. The plan for the future is more surgeries as she gets older, but I am confident that at CHLA everything will be fine because they have taken so much care of her since she arrived. She has a therapist that has assisted very much in her development. It has helped her speak and just become this wonderful little girl.”

Over the last three years, Fatima’s care team at CHLA has seen Rosina become a confident parent of a child with a medically complex diagnosis. Although she was hesitant in the beginning, Rosina has become an active member of the CHLA Exstrophy community. The entire family has participated in support groups, and they have been active in family mentorship. Rosina feels that “the conferences…helped me a lot, with time I have learned more about the illness. It was also helpful to see that my daughter wasn’t the only one with this condition. To be honest, for a while it felt as if we were the only ones who were dealing with this. But to see families and children that looked like Fatima allowed me to open up and have more optimism for her outcome and way of life.”

The first weeks and months of Fatima’s life remain a difficult period to remember, and Rosina has advice for families who have recently received an exstrophy diagnosis. She now knows how important it is to advocate for herself and her daughter, as a vital member of the care team. Further, she is confident in the care CHLA has provided: “The first thing is to have faith in God, that’s the most important thing, and everything else [is] the doctors. I’m very thankful to the doctors at CHLA who have helped my Fatima. I feel like they have worked so hard to make sure that everything with her has gone well. I think that it’s a miracle. It’s a miracle that my daughter is here with me, and I must believe it’s because I trusted in the doctors to do what is best. That’s what I would tell anyone else”.

A Brighter Future

Fatima is turning three in August, and looking back now, it’s hard for Rosina to believe where she started out. “I recently have seen pictures from when she was born and to see how she is doing now. It’s completely unbelievable. Even when she had multiple surgeries and had to have a catheter, she’s always been a happy child, playing with her siblings. As I see her right now playing with her sister, it is hard to believe that she has [cloacal exstrophy] and has gone through so many surgeries – she is perfect to me! She is intelligent and such a happy girl. I don’t know how to describe it. She’s like an angel that was given to me…. The entire experience has been a rare and difficult one to say the least. There were times that I thought I wouldn’t recover or be the same…. I am no longer scared to talk about Fatima’s condition and how she was born. I even feel proud to tell others, to show them pictures of when she was small. She has endured so much in her short life but is the happiest; this gives me the strength to keep doing the best for her and my family.”

 A miracle girl, indeed.

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