Hello family & friends,
Our family is setting up this donation account on behalf of Jasen and Amanda Leonard and their baby girl, Alayna, who is expected to arrive in November. In the womb, Alayna was diagnosed with a condition known as CDH “Congenital Diaphragmatic Hernia”, which basically causes her organs to take space in her lungs, which prevents lung development. Baby girl's case of CDH has been classified as serious. She will need surgery shortly after birth and is expected to be in the ICU for at least 3 months.
Amanda is currently being seen by specialists in Los Angeles. She will stay at the Ronald McDonald House starting November 1st for close monitoring. She is scheduled to be induced on November 19th. Jasen will take a short leave but will have to resume working to maintain health insurance coverage and to provide financial support. He will be commuting back and forth to Los Angeles.
We are reaching out to ask for help since Jasen and Amanda will inevitably incur many expenses due to Alayna's surgery and treatment. Your donations will help offset their lodging, medical bills, accommodations for baby Alayna specialty care as well as other expenses that may come up during this difficult time.
We've included information below that outlines Baby Alayna's condition, treatment and continued care.
With strong faith the Leonard family faces a long journey and although the exact expenses aren't final, any donation amount is impactful.
We also ask for your prayers and supportive/encouraging thoughts. Baby Alayna is already a remarkable little girl and a true blessing that we can't wait to welcome into our lives.
Please help us and share baby Alayna's story within your social communities.
Our deepest hearts of thanks go out to each of you.
Congenital diaphragmatic hernia (CDH) occurs when a hole in the diaphragm muscle — the muscle that separates the chest from the abdomen — fails to close during prenatal development, and the contents from the abdomen (stomach, intestines and/or liver) migrate into the chest through this hole.
When the abdominal organs are in the chest, there is limited room for the lungs to grow. This prevents the lungs from developing normally, resulting in pulmonary hypoplasia (or underdeveloped lungs). This can cause reduced blood flow to the lungs and pulmonary hypertension (high blood pressure in the pulmonary circulation), as well as asthma, gastrointestinal reflux, feeding disorders and developmental delays.
CDH occurs in 1 in every 2,500 births with 1,600 cases being in the U.S. each year. The cause of it is unknown. CDH can occur on the left side, right side or, very rarely on both sides. It can be life-threatening.
In consultation with the specialist, a team will closely monitor Mom's pregnancy, with frequent exams especially in the last trimester. This close monitoring will help doctors determine when the best time to deliver.
Follow-up ultrasound exams should be performed every four weeks throughout the pregnancy to evaluate baby’s growth and activity.
At this time, relocation to one of our Ronald McDonald Houses is necessary. Mom and Dad will need to relocate sooner if they undergo prenatal intervention, if extra fluid develops around baby's (polyhydramnios), or if there are signs of preterm labor. This will ensure that Mom and Dad are nearby in the event labor occurs earlier than expected.
At delivery, the Neonatal Surgical Team — including neonatologists, surgical advanced practice nurses, neonatal and surgical fellows, neonatal surgical nurses, and respiratory therapists — is waiting to stabilize the baby and provide any specialized ventilation (breathing) assistance before bringing the baby to the NICU for further care.
At stabilization, a breathing tube is inserted into baby’s airway so a ventilator can be attached to help with breathing. A tube going from the mouth or nose to the stomach will be placed to keep air from getting into the stomach and intestines causing less space for the lungs to expand. Intravenous and arterial lines will be placed in blood vessels of baby’s arms, legs or belly button for administration of fluids and medications. Blood gases will be drawn from the arterial line to assess how well the baby can oxygenate.
In addition to surgical repair, babies may require specialized equipment such as the oscillator ventilator, heart lung machine (ECMO) or nitric oxide, but it is important that they have immediate access when necessary.
After delivery, babies with severely compromised or fragile lungs may require extracorporeal membrane oxygenation (ECMO), a temporary heart-lung bypass technique used to oxygenate the blood and allow the lungs to rest. ECMO is used when other treatments are unsuccessful. The lungs rest as the ECMO circuit does the work. In some cases the baby may have the CDH repair while on ECMO.
Postnatal surgery for CDH:
Surgical repair of CDH after delivery depends on baby's progress in the days following birth, and can occur as early as three days of life. Typically, babies with CDH are extremely sensitive to noise and movement.
Babies receive general anesthesia and will be continually monitored by a pediatric anesthesiologist. An incision is made just below baby’s rib cage, the organs in the chest are guided back down into the abdomen and the hole in the diaphragm is sewn closed. The space created in the chest allows the lungs to continue to grow; in time, babies will grow more air sacs or alveoli through early childhood.
For babies with large defects or completely lacking a diaphragm, the hole is closed with a GORE-TEX® patch or muscle flap. Sometimes the abdominal wall cannot be closed during surgery. In these cases, temporary placement of a silo, mesh or Vacuum Assisted Closure® (VAC) device may be recommended. As the baby grows, the condition of the patch will be regularly monitored by doctors to ensure that it remains intact.
Follow up care:
Long-term follow-up by a team of experts made up of clinicians from general surgery, developmental pediatrics, pulmonary, cardiology, psychology, nutrition, audiology, social services and others as needed. Appointments are tailored to baby's needs, but typically occur at 6 months, 12 months, 2 years, 4.5 years and 6 years, and then every 2 years thereafter, as needed. Appointments are designed for visits to multiple specialists in one day.
- Jacqueline Romanowski
- Truly Thomas
- Shannon Moore
Fundraising team: Baby Alayna Grace Leonard (6)