Rosina comparte la historia de su hija, Fátima, también conocida como “Mily”, y su viaje con extrofia cloacal en el Children’s Hospital Los Angeles.

Cuando nació Fátima, su madre, Rosina, no tenía idea de qué esperar. Había soñado con tener un cuarto bebé, pero este embarazo era de alto riesgo; Rosina era diabética y previamente había sufrido un aborto espontáneo. “Ella siempre ha sido un milagro. Todos los días le agradecería a Dios y contaría mis bendiciones porque mi bebé todavía está aquí conmigo. Siento que todo sucede por una razón “. Rosina siempre quiso nombrar a un niño “Milagros”, que en español significa “milagro”. Su esposo nombró a sus primeros tres hijos, y no fue hasta que nació el menor que el nombre encajó: “No hasta Fátima. La llamo Milagro [Milagro], “Mily” para abreviar “.

Miedo e Incertidumbre

Una madre con experiencia, Rosina podía decir cuándo su ultrasonido de 5 meses estaba tardando más de lo habitual; Poco después, su bebé recibió el diagnóstico de extrofia cloacal. “Fue un verdadero shock por decir lo menos. Algo difícil de comprender. Habíamos esperado y orado por un bebé. Y luego descubrir que ella [iba a nacer] con esta condición. Sin saber si sobreviviría y la sensación de impotencia porque no había nada que yo pudiera hacer … Me senti mal. Me sentí muy mal. Yo estaba en shock…. Para ser sincero, no sabía lo grave que era. Fue un diagnóstico realizado durante una ecografía, por lo que casi no lo acepté. Realmente oré y puse mi fe en Dios “. A pesar de su fuerte fe, Rosina luchó por encontrar la paz con el complejo diagnóstico de su hija.

Después del parto, Fátima fue transferida a CHLA. La separación inicial de su bebé fue abrumadora para Rosina. “Cuando me curé lo suficiente como para finalmente verla en el Hospital de Niños, fui informado de toda la situación y el plan. Para ser sincero, estaba en estado de shock. No podría pensar con claridad. Me sentí muy mal y todo me dolía. Cuando me acuerdo de la situación todo parecía como si fuera un mal sueño. No sabía qué pensar o hacer “. Con el tiempo, llegué a comprender mejor la condición de Fátima: “[CHLA] cuidó muy bien a mi niña, y eso me encanta. El conocimiento y la información sobre [extrofia cloacal] llegaron con más tiempo en el hospital, además de que se les informó sobre los próximos pasos [y] el plan de tratamiento ”.

Aprendiendo a Navegar la Condición de Mily

El primer año de Fátima fue un desafío, ya que su familia aprendió a navegar por el mundo médico y hacer frente a sus necesidades. “Tenía 5 meses [de edad] con la vejiga afuera. CHLA envió una enfermera a mi casa para enseñarme cómo cuidarla. No estaba seguro de poder hacerlo, pero [al final] pude cuidarla y asegurarme de que no le pasara nada. Fue doloroso verla, pero estaba decidida a cuidar a mi bebé. Después de cinco meses, se sometió a una cirugía para cerrar la vejiga “.

“Terminó teniendo neumonía después de la cirugía debido a la gripe. E infección de los pulmones … pensé que no lo lograría porque no podía obtener oxígeno. Pero CHLA hizo todo lo posible para mantenerla viva. Estuvo en la UCI durante 1 mes, con un tubo de respiración. Pero como dije, creo que ella es mi milagro porque ha podido superar muchas cosas y todavía está aquí conmigo “.

CHLA Ofrece Esperanza

“Realmente me gustó que los cirujanos fueran exhaustivos y se realizaran múltiples ultrasonidos y pruebas para asegurarse de que todo saliera bien. ¡Y realmente lo hizo! Acababa de someterse a una cirugía en junio [2020], y solo una semana después estaba despierta y casi como si nada le hubiera pasado. El plan para el futuro es más cirugías y, a medida que crezca, también, pero estoy seguro de que en CHLA todo estará bien porque la han cuidado mucho desde que llegó. Ella tiene un terapeuta que la ha ayudado mucho en su desarrollo. La ha ayudado a hablar y se ha convertido en esta maravillosa niña.

Durante los últimos tres años, el equipo de atención de Fátima en CHLA ha visto a Rosina convertirse en una madre segura de un niño con un diagnóstico médicamente complejo. Aunque al principio dudaba, Rosina se ha convertido en un miembro activo de la comunidad CHLA Exstrophy. Toda la familia ha participado en grupos de apoyo y han participado activamente en la tutoría familiar. Rosina siente que “las conferencias … me ayudaron mucho, con el tiempo aprendí más sobre la enfermedad. También fue útil ver que mi hija no era la única con esta afección. Para ser sincero, por un tiempo se sintió como si fuéramos los únicos que estuviéramos lidiando con esto. Pero ver familias y niños que se parecían a Fátima me permitió abrirme y tener más optimismo por su resultado y forma de vida “.

Las primeras semanas y meses de la vida de Fátima siguen siendo un período difícil de recordar, y Rosina tiene consejos para las familias que recientemente recibieron un diagnóstico de extrofia. Ahora sabe lo importante que es abogar por ella y su hija, como un miembro vital del equipo de atención. Además, confía en la atención que CHLA le ha brindado: “Lo primero es tener fe en Dios, eso es lo más importante, y todo lo demás [son] los médicos”. Estoy muy agradecido con los médicos de CHLA que han ayudado a mi Fátima. Siento que han trabajado muy duro para asegurarse de que todo con ella haya salido bien. Creo que es un milagro. Es un milagro que mi hija esté aquí conmigo, y debo creer que es porque confié en los médicos para hacer lo mejor. Eso es lo que le diría a cualquier otra persona ”.

Un Futuro más Brillante

Fátima está cumpliendo tres años en agosto, y mirando hacia atrás ahora, es difícil para Rosina creer dónde comenzó. “Recientemente he visto fotos de cuando nació y ver cómo está ahora, es completamente increíble. Incluso cuando tuvo múltiples cirugías y tuvo que tener un catéter, siempre ha sido una niña feliz, jugando con sus hermanos. Tal como la veo ahora jugando con su hermana, es difícil creer que tenga [extrofia cloacal] y que haya pasado por tantas cirugías, ¡es perfecta para mí! Ella es inteligente y una niña muy feliz. No se como describirlo. Ella es como un ángel que me fue dado … Toda la experiencia ha sido rara y difícil por decir lo menos. Hubo momentos en que pensé que no me recuperaría o sería igual … Ya no tengo miedo de hablar sobre la condición de Fátima y cómo nació. Incluso me siento orgulloso de contarles a los demás, mostrarles fotos de cuando era pequeña. Ella ha sufrido tanto en su corta vida pero es la más feliz; esto me da la fuerza para seguir haciendo lo mejor para ella y mi familia “.

Una chica milagrosa, de hecho.

 

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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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Family shares their story and thankfulness for the A-BE-C community and the team at Seattle Children’s.

Our adoption journey began in late 2016, little did we know that our daughter was just being born in China. On June 16th 2018, we received a call from our adoption specialist who had found our daughter; we were told she had a complex urogenital condition called Bladder Exstrophy. We were overwhelmed by fear and uncertainty for her future as we had never even heard of this condition. However, we knew this was our daughter and nothing was going to stop us from bringing her home.

Research, Guidance & Support

Through the guidance of our pediatrician, our local urologist, an amazing family support group on Facebook, and the Association for Bladder Exstrophy Community, we spent the next three months learning all we could about our daughter’s condition. Our daughter had already had one failed closure and from our research we knew that finding an experienced team was necessary for a successful second closure and for her future. We were able to connect with Dr. Merguerian at Seattle Children’s Hospital with the support of our local urologist and with the information provided by A-BE-C on centers of excellence. Dr. Merguerian provided a sense of calm and hope for our daughter’s future. Out of his personal time he called us, reviewed our daughter’s file and coordinated with our local urologist preparing for our daughter’s surgery.

Team Comes Together for Closure Surgery

After eight months home we traveled from Tennessee to Seattle, WA, to work with the Seattle Children’s team for our daughter’s second closure. We had two weeks of pre-op appointments meeting with orthopedics and urology. The entire team worked seamlessly together, answering all of our questions and easing our concerns. The team was amazing on the day of her surgery, doing their very best to put our daughter’s anxiety (and ours) at ease, making balloon animals from gloves and talking us through the procedure. Our daughter’s surgery was particularly difficult due to medical history, but after 11 hours in the operating room our daughter had her successful second closure. The team spent time after a long day to discuss the surgery and what the outcomes mean for our daughter’s future. The Seattle Children’s anesthesiologist team stayed with us after the surgery. The two weeks post-op were difficult, but the entire Seattle Children’s team was an amazing support and took such good care of our daughter. Dr. Merguerian and his team not only ensured our daughter was supported medically, but was deeply cognizant and concerned for our own mental and physical well-being.

Hope for the Future

Initially it seemed the task before us, caring for this beautiful little girl with a complex condition, was insurmountable. However, the A-BE-C community, the online family community and the Seattle Children’s team were vital in our journey. We are now a year post-op and our three-and-a-half-year-old daughter is full of energy and more personality than we know how to handle. We are eternally grateful to the Seattle Children’s team and to all the families who have supported us.

 

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