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Alysha, Ben, and Kora
7/29/2017 Latest post:
Welcome to Alysha, Ben and Kora's Caring Bridge site. Kora has been diagnosed with fast-growing tumor on her heart (pericardial teratoma). This is an extremely rare occurrence, less than 1 in a million chances. We are using this site to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Alysha & Ben’s Pregnancy 2017:
3-18-17: Alysha & Ben found out pregnant.
6-20-17: Ultrasound revealed “It’s a girl!”. Also, fluid around the heart was indicated on the ultrasound. (Dr. David Wen, OB/GYN, St. Paul Children’s). Follow-up appointment scheduled for 7-14-17.
6-24-17: Gender Reveal Party at Alysha & Ben’s.
7-14-17: Ultrasound further revealed the fluid around baby’s heart, as well as an intrapericardial teratoma, a benign, fast-growing tumor on the baby’s heart. Cardiac teratoma is extremely rare.
Recommendations: 1) Go to CHOP (Philadelphia Children’s Hospital which is a leader in treatment of teratoma’s) for fetal surgery to remove the tumor, with 1-5% success rate; 2) Have the surgeon from CHOP come to MN to perform the surgery at Minneapolis Children’s; 3) Terminate pregnancy – if tumor not removed, baby will die, & a stillbirth would result due to tamponade (compression of heart caused by fluid in sac surrounding heart), fetal hydrops (abnormal accumulation of fluid), & compression of the fast-growing teratoma which would reduce cardiac output and lead to death. Other: Remove fluid from around baby’s heart through needle extraction. Alysha was given shot of Betamethasone to increase lung development of baby.
7-15-17: Procedure scheduled to remove fluid from around baby’s heart (pericardiocentesis) at Minneapolis Children’s Mother & Baby Center.
Dr. Donald Wothe, Maternal & Fetal Medicine Specialist & High Risk Pregnancy Dr. David Lynch-Salamon, Maternal & Fetal Medicine Specialist & High Risk Pregnancy Dr. Joseph Lillegard, Pediatric Surgeon & Research Director (trained at CHOP) Dr. Saul Snowise, Maternal & Fetal Medicine Specialist & High Risk Pregnancy Anesthesiologist Marissa, Nurse Anesthetist Ellen, Ultrasound technician Nurses
Outcome: 12 cc’s of fluid removed from around heart. Baby’s heart function improved
Notes: • Alysha was anesthesized, as well as the baby, for the procedure in order to keep both still & reduce risk of needle penetrating baby’s heart or other organs. • Alysha was given shot of Betamethasone to increase lung development of baby. • Alysha was given shot to reduce Rh incompatibility with baby (typically given at 28 wks. • Procedure scheduled at 9 am; however, it occurred at 12:00 pm due to consultation by the neonatal team. • Alysha will go for ultrasound on Monday, 7-17-17, to check fluid accumulation & teratoma growth. She will be monitored every 2-3 days.
7-16-17: Dr. Lillegard phoned Alysha & Ben to discuss the option of the EXIT (Ex-utero intrapartum treatment) procedure which could be done at 30-31 weeks gestation if the teratoma does not grow significantly. A C-section would be done & the baby would undergo open heart surgery to remove the teratoma. Pericardiocentesis (removal of fluid from around baby’s heart) would be done as needed prior to EXIT.
7-17-17: Ultrasound & echocardiogram was conducted by Ellen (ultrasound technician) & Dr. Lynch-Salamon, Medical Director in Coon Rapids. Results indicated that very little fluid accumulation since 7-15-17; and, the teratoma had not grown since 7-14-17. Also, the fluid that had been under the skin was gone. This was good news.
Dr. Lillegard phoned Alysha that evening to see if they had questions & to inform them that the Midwest Fetal Care Team was preparing for surgeries in Minneapolis – 1) the fetal surgery to remove the teratoma and 2) for the EXIT procedure. He shared that none of the doctors would take vacation or be out of town so they can be available.
7-20-17: Ultrasound & echocardiogram scheduled at Minneapolis Children’s Mother & Baby Center. Results indicated very little fluid accumulation since 7-17-17; and, teratoma had not grown much. Heart function looks good. This was good news. Dr. Rios, Pediatric Cardiologist was present. It is believed that the pericardiocentesis on 7-15-17 has helped & has provided optimism.
Rechecks will be scheduled every Tuesday and Friday at Minneapolis Children’s– once a week a pediatric cardiologist will be present to read & consult. Transfer of OB/Gyn care from St. Paul Children’s will take place so that all care will be coordinated at Minneapolis Children’s Hospital. August 1 appointment will include neonatologist and pediatric cardiac surgeon. Met with Melinda Leiran, RN, Fetal Nurse Care Coordinator Baby will be measured at beginning of August.
7-25-17: Since last Thursday (20th), the ultrasound revealed that the tumor on baby Kora’s heart has grown quite a bit and is larger than the heart. There was no new fluid accumulation around the heart, but there is concern that the tumor will soon be compressing the heart which could lead to congestive heart failure. Kora’s heart is functioning well at this point. An MRI was ordered and will be done tomorrow, plus the echocardiogram scheduled for Friday will be done Thursday to check the cardiac output which is very important at this point.
Dr. Joseph Lillegard (Pediatric surgeon) & Dr. Marijo Aguilera (Maternal Fetal Specialist) met with us to discuss the above & next steps. The MRI will provide measurements & also look at how the mass is impacting the other organs, & strength of the heart. They reviewed risks for both Alysha & for Kora. Since the team would want gestation to be at 27 weeks to do the EXIT procedure (C-Section followed by surgery on baby), it appears that the fetal surgery may need to be done. This would entail surgery to remove the teratoma (tumor) on the baby’s heart in utero, return her to Alysha’s stomach where she would remain for as far along as possible, & delivery by C-section.
Also, explained if do fetal surgery to remove mass & put baby back in Alysha for remainder of gestation, the risks involved. Alysha and Ben have decided to have the surgery at Minneapolis Children’s vs. going to Philadelphia. Dr. Lillegard did his residency at Children’s Hospital of Philadelphia & has been in very close communication with the staff there regarding the teratoma & treatment.
7-26-17: Transfer of care officially done, transferring Alysha’s OB/Gyn care from St. Paul Children’s to Minneapolis Children’s. MRI completed.
7-27-17: Ultrasound and echocardiogram completed. Many measurements done throughout the process. Dr. Dummer, Pediatric Cardiologist, present and worked with Paula, Sonographer in imaging the heart. Cardiac output turned out well, pleased with results. No appearance of stress to heart. Little fluid around one lung, none around heart. Although some compression of teratoma on the heart, it does not appear remarkable at this time.
MRI results indicate that Kora is 2# 2 oz. at 25 weeks 3 days. The weight is based on 4 measurements: Head circumference , femur length, abdominal circumference , & ear to ear. Femur length most predictable. The mass is very large and has pushed the heart down and at a 90 degree angle.
Met with Ann, Licensed Pediatric Social Worker regarding insurance, resources, setting up tour of Neonatal Intensive Care Unit, Ronald McDonald House, etc.