Hello!

My name is Ember Johnson. I am raising money for my dearest friend Allison Radzicki, Nickianthony Siniscalchi, and their unborn baby boy # 3. Alli is an amazing mom, partner, nurse, daughter, sister, and friend.

Alli and Nick were so excited to find out they were pregnant with baby number #3! The baby is due in December 2022. A third boy! Nico and Arlo will be amazing big brothers. Unfortunately, the anatomy scan at 19 weeks was not the happy occasion they were anticipating. The baby boy was diagnosed with a very rare lung mass called a CPAM (Congenital Pulmonary Airway Malformation, or Congenital Pulmonary Adenomatoid Malformation). This congenital mass is not genetic and has no known cause. The baby, thankfully, otherwise is perfect.

This diagnosis is incredibly stressful for the Radzicki/Siniscalchi family. The family is heartbroken, scared, and above all, hopeful their baby boy will be ok. There have been many doctor's appointments, ultrasounds, fetal ECHOs, fetal MRIs, and much upsetting news in the last few weeks. The situation is overwhelming for Alli and her family to manage and figure out how to save their precious baby. CPAMs are incredibly rare and are routinely treated in only a few hospitals in the country. No hospitals in New England specialize in the treatment of the condition (including Boston Children's Hospital!). Alli and this baby will need to travel to the Children's Hospital of Philadelphia (CHOP) for lifesaving care from an experienced medical team. There are many financial concerns related to treatment at CHOP. Although Alli has health insurance, the care at CHOP is not "In Network". The OOP (Out of Pocket) medical costs are estimated at a minimum of $30,000 for care through the pregnancy and the baby's first year. There will also be additional costs associated with travel, lost wages, and countless other expenses trying to save this baby's life. The baby will also require a specially trained pediatric pulmonologist for monitoring and health maintenance after birth and surgery.

Thank you for considering donating to this wonderful and deserving family. Please share on social media and spread the word to your friends, families, and coworkers. Please private message me if you are interested in providing donations directly to the family or support in other ways. Please continue reading below for more information about the CPAM diagnosis, and treatment scenarios for Alli and the baby.

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CPAMs generally grow faster than the baby from about weeks 20-28 of pregnancy. The baby’s mass is currently being monitored weekly via imaging studies to ensure it does not grow too big or grow too fast, which can compromise healthy lung tissue. The baby’s heart is also being monitored closely with the same weekly imaging to ensure the mass does not begin to cause a mediastinal shift and/or compress the heart. If the latter happens, it can be life-threatening for the baby, causing Hydrops Fetalis (fetal heart failure), as well as preventing normal lung tissue from growing. Unfortunately, CPAMs leading to hydrops can be life-threatening for the mother as well by causing a condition called Maternal Mirror Syndrome.

CPAM information from CHOP:

Congenital Pulmonary Airway Malformation

BORN TWICE Documentary series about CHOP and Fetal surgery where Alli and the baby will be evaluated. The babies featured in the series have different diagnoses, but provide a real glimpse into what Alli and this baby will be going through during this year's journey if you are curious. Dr. Adzick, from the documentary, is the surgeon Alli will be seeing at CHOP and is this baby's best hope for survival. He has spent his whole career studying lung legions and is the surgeon who developed the CVR (CPAM Volume Ratio) used worldwide to monitor the growth of these masses. CHOP is the top children’s hospital for pediatric pulmonology.

Potential Treatment Scenarios for Alli and Baby Boy:

1: Best-case: Frequent monitoring (weekly) during the remainder of the pregnancy. Alli will be able to carry this baby to term and deliver locally. The baby may be born asymptomatic. The baby would then require major surgery, removal of at least one lobe of his affected lung (lobectomy) at CHOP, within the first year of life.

2: Next best case: Frequent monitoring during the pregnancy. Weekly to twice weekly. The baby is at higher risk due to mass size or characteristics. Alli may have to deliver early and/or deliver at CHOP. The baby is either symptomatic or asymptomatic at birth. The baby would then require major surgery, removal of at least one lobe of his affected lung (lobectomy) at CHOP, within the first hours to first year of life.

3. The monitoring done during pregnancy determines the baby is at extremely high risk for having a compromised airway at birth and/or fetal heart failure is detected. Alli and baby require Fetal Surgery or EXIT (ex utero intrapartum treatment) surgery at birth to save his life. This would need to be done at CHOP. In this scenario, Alli and the baby would be operated on simultaneously. Alli and the placenta would serve as the baby’s source of oxygen and nutrients while surgeons stabilize the baby’s airway, then the baby would be delivered. This scenario would likely also require an extended NICU stay at CHOP.

As you can see, even the best-case scenario involves major lung surgery for the baby at CHOP. If left untreated, even asymptomatic CPAMs can serve as a source of frequent lung infections, abscesses, pneumonia, pneumothoraces (collapsed lungs), empyema, and eventual malignancy. Removal by a surgeon inexperienced in these masses could result in some of the mass being left behind, leading to regrowth and the need for a second major lung surgery- leaving the baby with even less healthy lung tissue. There is no way around the major financial costs for this family. Please help and donate if you can. Please reach out to me if you have questions. All funds will go directly to out-of-pocket medical costs and travel expenses.

A heartfelt thank you for considering donating to save a precious little life,

-Ember Johnson