JAHIRA ROGUE’S CDH Journey Part 1/ Congenital Diaphragmatic Hernia

Our sister is a CDH survivor this our story HI I’m Lia and I’m six, having a sister with cdh is weird Hello, I’m Miya and I’m 12 and having a sister with CDH is a lot of responsibility. Having a daughter with CDH, is scary. It’s a journey and its a learning process. We found out at 19 weeks that our baby had a life-threatening illness We were devastated earlier that year we suffered a miscarriage And it appeared as if our rainbow baby would also be lost to an illness. We had never heard of Allow me to introduce Jahira Rogue our miracle rainbow a baby We have decided to share a semi detailed synopsis of our experience, in total there are going to be four uploads This is part one the first 31 days One in 2,500 babies are diagnosed with CDH each year in the United States. The survival rate is 50% CDH or congenital diaphragmatic Hernia is an opening in the diaphragm which is the muscle that separates the chest and the abdomen Without this muscle organs from the abdomen float up into the chest and constrict the growth and function of the chest organs The hole can be as small as a coin or as large as the entire diaphragm Like Jahira most cases occur on the left side extensive testing indicated that your Jahira had a portion of her intestine stomach and liver pushing through her hernia an Ultrasound showed her heart pushed to the opposite side of her body We also completed an amniocentesis with chromosomal analysis The obstetrician advised us that there is a high incidence of associated Chromosomal anomalies a few of which were one hundred percent fatal. Jahira was born via emergency c-section my water broke at 37 weeks and five days After being admitted the doctors noticed Jahira’s heart rate dropping during contractions We later learned she had the cord wrapped around her neck and body After she was delivered I wanted to hear her cry. I wanted to hear her cries so badly She didn’t cry She couldn’t she was cyanotic, had a decreased tone, bouts of apnea and her Apgar score was one the NICU immediately began preparing Jahira for transport to a level 4 NICU We were approached by a representative to add Jahira to a research study for a trial drug But before I could review the study, Jahira here no longer qualified At this stage he here was diagnosed with CDH, IUGR, PPHN, adrenal insufficiency, RDS, and hypertension She was on a breathing machine and receiving narcotics like fentanyl and dopamine through her umbilical catheter Her echo showed many additional issues, but for the sake of time, I am summarizing. Just four days of relative stable stats and adjusting to our new normal, ended on the fifth day the day her repair surgery was initially planned on this day Jahira developed acute hypoxia related to her umbilical venous catheter her respiration dropped and tests eventually determined that the UVC The umbilical venous catheter needed to be removed and switched to a peripheral site on day six she continued to have respiration issues even after 55 milliliters of milky white fluid was removed from her chest, she was not responding as hoped and her machines and her medicines were almost maxed out Following detailed discussions with her medical team on February 9th. We agreed to place Jahira on ECMO. The results from her Echocardiogram showed worsening function of her right ventricle. She needed a break. She was tired and ECMO could give her the rest She deserved ECMO is a short-term means of life support to tubes or cannula are placed and infuse oxygen into the blood while removing co2 It’s a machine that mimics the function of heart and lungs The ECMO machines are monitored around the clock Here you can see the two cannulas near her head the connector to the ECMO machine She was very positional meaning that any slight movement caused her stats to crash Because of this and the precarious placement of cannulas she is heavily medicated with pain meds and a paralytic On the evening of February 11th We received a call that Jahira was taken off ECMO for approximately six minutes and placed back on She was removed in order to reposition her And to remove the clot from the venous cannula Clotting continued to be an issue while she remained on ECMO. In this clip her swelling is apparent she was receiving fluids, but due to not being able to move the fluids were pooling in her body. February 16th, she was removed from the ECMO machine and we tried to keep her quiet calm and unstimulated We were trying to make sure that she did not use any of her strength So that she would be able to make it to surgery. We were successful and on February 19th Jahira was in surgery Her surgery to repair her diaphragm lasted more than four hours and required a Gortex and SIS patch She did amazingly well during surgery and spent the rest of the day sleeping off the medication The day after surgery a chest tube was placed at 50 milliliters of fluid drained from the site at this point her diagnosis includes ascites, left hemothorax, gastritis and acute respiratory failure with hypoxia February 23rd, we got to hold her. We got to finally hold our baby We were so worried of causing her to have a setback, but she did so well February 24th, the chest tube was removed and lasix was given to add as a diuretic Jahira also officially began small feeds on this day We sat around anxiously waiting for her to poop to prove that the surgery went well to prove that her intestines could work She looks awesome! She is just so awake and alert! February 27, her small feeds were stopped and she was extubating. We thought she was ready She gave such a gallant effort, but she wasn’t quite there. Okay, are you going to sleep in the middle your bath? hey! On March 1st, she needed to be reintubated Due to increased work of breath and increased oxygenation requirements at this time her team decided to restart her feeds and also see if they can increase the amount that she could receive This concludes the first 31 days again, there’s a lot that we did not include If you have any questions, you can definitely ask me I’m pretty open about many of the things that happen with Jahira and her journey Part 2 will be the next 30 days. Thank you guys for watching

16 Replies to “JAHIRA ROGUE’S CDH Journey Part 1/ Congenital Diaphragmatic Hernia”

  1. Thank you for sharing this personal journey with us. I learned so much from you and I hope to meet you one day.

  2. we so often deliver these babies and they get shipped off to nicu. we forget as nurses how hard the battle is after this

  3. My sister is a NICU nurse, so I am slightly familiar with CDH. I am so happy to see Jahira kept fighting. You have such a beautiful family. Keep inspiring us!!!

  4. First off, I will try to be brief, I am totally blind, but my story does not add up to this. You are very courageous, even your daughter, I am definitely going to follow this, just listening to this almost brought me to tears, to understand what your little girl was going through, "I am out of words" all I can say is amazing, bravery, determination, strength, and every other words that I can think of that resemble these. It makes you think about your life, what you feel is important until you hear about such things as this, I wish your daughter a great recovery.

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