“Let the fight continue on”: The O’Neills' Story

Saran Nuth

I'm so grateful you are speaking out about prematurity and the effects it has on families. I'm hopeful there will be a cultural change in the way our society cares and support families who are struggling with such a devastating life event. 

Here's our story:

Our little miracle, Elise, came as a blessing after four heartbreaking miscarriages. She was induced at 34 weeks for intrauterine growth restriction (IUGR) as a result of my rare autoimmune disease called Chronic Hystiocytic Intervillositis (CHI). I was not aware of CHI until I was diagnosed with it after the birth of my preemie. With this condition, a baby is thought to be a foreign object or a virus, and triggers a response for the body to attack the baby by cutting off placental blood flow. Pregnancies complicated by CHI usually result in a miscarriage or still birth 95% of the time, and has a high 85% recurrence rate. Sadly, there is no cure. 

Elise spent the first 3 weeks of her life in the Neonatal Intensive Care Unit (NICU), where she was found to have congenital heart defects; 2 small ventricular septal defects (VSD) and a patent ductus arteriosus (PDA) significant in size. The PDA affected her ability to feed and breathe resulting in poor growth and development.  

When 5 weeks later, the ductus still had not closed, Elise, only a mere 4 lbs was re-hospitalized in the NICU for intravenous Indocin, a medication that can close the vessel. The treatment was unsuccessful. Two weeks later, she was hospitalized for acute congestive heart failure (CHF) and failure to thrive (FTT), and subsequently required tube feeding.

At the age of 3.5 months, a team of UCSF cardiologists attempted to close Elise’s PDA via cardiac catherization. This procedure was unsuccessful, and her doctors intended to attempt another catherization when she reached a hearty 11 pounds. During her stay at UCSF, Elise caught a virus from her little roommate. After being home for 1 week, she was taken to the ER, where she tested positive for pneumonia and respiratory syncytial virus (RSV) resulting in hospitalization.

Unfortunately, Elise's growth significantly slowed down, prompting an urgent heart operation to close the ductus March of 2013. Her recovery didn't go so well and she needed a second operation to repair a chylous pleural effusion. UCSF was our home for one long month. 

In addition to her cardiac condition Elise had proctocollitis, a formula/milk protein allergy that causes lower intestinal bleeding. Stress took a toll on my breast milk supply and unfortunately I was only able to produce for 4 months. As a result, her pediatrician referred us to the milk bank. Frustratingly, our insurance denied coverage for the cost of her prescription to the milk bank, which was nearly $2000 + each month depending on her intake. I was shocked and in disbelief. How could they deny my daughter's basic medical need for proper nutrition? 

In addition to our loss of income from having to take time off from work to care for our child, to be with her during hospital stays away from home, we had an expensive prescription cost for milk looming over our heads, for which there was no way for us to pay. We were already behind on bills and were on the verge of filing bankruptcy; we both had a successful career with a masters degree in Occupational Therapy, so how did this happen to us? I was scared that my daughter wasn't going to get the proper nutrition she deserved all because her insurance would not cover her breast milk prescription (formula is covered).

But by the grace of God and many wonderful strangers, Elise was able to receive donor breast milk from caring moms through casual milk sharing, and the Mother's Milk Bank of San Jose in California. However, she did not bottle feed well and continued to require tube feeding. She gagged, vomited, and was unable to keep much of her feedings down. After having had several tests done, Elise was found to be at high risk for silent aspiration of thin liquid and food into her lungs. To this day, feeding continues to be a huge challenge for her to overcome. 

Despite her rough start in life and residual medical issues, she is the strongest little fighter and the happiest baby that we know. We are undoubtedly the luckiest parents to have been blessed with the sweetest rainbow baby. And we thank God each day and every night for giving us the most precious gift, our daughter Elise...our joy...our everything. Her journey in life has been quite an emotional roller coaster to say the least. We are still experiencing the emotional and financial aftermath nearly 3 years later.

When your story first came out, I was so hurt and angry from what I read. I just couldn't believe how some people could be so disgusting and merciless. People like Tim Armstrong. I was so outraged by Tim's public shaming of these precious miracles and their parents. As if your beautiful little miracle and your family haven't already gone through enough! 

People like those at my insurance company who decided my daughter wasn't worthy of prescription breast milk, and decided to seal her fate with a denial letter. They might as well have told me, sorry produce enough milk on your own, use formula like other "normal" people while your daughter continues to suffer from intestinal bleeding...or your daughter can starve and die because we don't want to hurt our pockets. 

I was outraged at the lack of public support and assistance for families with a medically distressed child. There is no such thing as an extended paid family leave for those experiencing a medical catastrophe. It's really sad when parents of preemies are expected to return to work like every other "normal" parents once the maternity leave/bonding period ends. There is no exception to the rules no matter how extenuating the circumstances may be. We couldn't qualify for any public assistance because our income was considered "over the limit" despite losing one and one half of our income. We were drowning in medical expenses and months of overdue bills. The fear of becoming homeless and not having a home to bring our child to after each and every hospitalization became a harsh reality.  Our savings were exhausted within a matter of months, and we ended up selling everything we could including our second car and our wedding rings out of desperation. Just to survive and maintain a roof over our heads. 

Nothing in the world could have prepared us for having a preemie baby. 

So it angers me to see the public shaming, lack of compassion and support from those who have no idea what us parents and families go through in our fight to claim our children's basic human rights and worth! 

Let our fight continue on until there is change and acceptance.