Maggie - Lobectomy at 8 months, Philadelphia, PA

by Beth, mom

October 1, 2009 - Birth day

I had a normal pregnancy, ending with a scheduled Cesarean Delivery due to my baby’s breach presentation. Maggie was born on Thursday, October 1, 2009, weighing in at 9 lbs, 3 oz – a big baby who looked amazing and healthy, until she turned blue.

Immediately, she was given blow-by oxygen, stabilized and transferred to the NICU in the local hospital where I delivered her. Three days later, when I went home, she came home. What followed for the next 9 months was nothing short of a parent’s worst nightmare.

I took Maggie to her pediatrician for her routine 5-day well-check. The pediatrician did not like the way Maggie was breathing. She had very strong retractions (pulling in of the chest & stomach) and very shallow breathing. The pediatrician's first action was to rule out Mitochondrial Disease, have x-rays completed, and blood work drawn. 

I drove Maggie over to the local hospital for the x-rays and blood work. I was told to wait at the hospital for the doctor to call me with the results. I waited & the blood work came back relatively normal, so I was sent home with Maggie to wait for the x-ray results. The doctor called me later that evening and said “it appears that her right lung has collapsed”. Well, of course, I flipped out! “But,” she continued, “the NICU doctor looked at her original x-rays and thought there was improvement, so we’ll keep an eye on that.”  In the meantime, 2 days later, I met with the local pediatric cardiologist. They did an EKG, ultrasound, and non-stress test. Her heart appeared to be fine.

A week later, I took her in to the pediatrician for her 2 week routine check-up.  Same practice, different doctor. She was alarmed by her rapid breathing and immediately left the room. She came back and said that she was going to have Maggie admitted to Fairfax Hospital for evaluation, that she did not like the way she was breathing and we need to get to the bottom of it.  

In the pouring rain, I drove to Fairfax Hospital (about 40 minutes away with no traffic, which never happens in Northern Virginia). Once there, I went to the admissions desk & was told that there was a room ready for my daughter on the pediatric floor. I was scared because I knew the flu & H1N1 were running rampant in our area. Maggie and I were met by two nurses who immediately hooked Maggie up to every piece of equipment possible and decided to run an “ng” tube into her nose! I had no clue what was going on & I was just crying & calling my husband frantically. All the while, our 2 older sons were at home with a neighbor. The next day, after a torturous night of sleep, the doctors ran a CT scan on Maggie. There did appear to be collapse in her right lung. From what we understood for the 5-day stay there, upon discharge, all of this should be outgrown in about 2 weeks or so. I left the hospital on a Tuesday with a prescription sheet for an x-ray and a follow-up doctor appointment in 2 weeks.

At home, things seemed normal for Maggie.  She slept a lot and didn’t have much of an appetite because she tired easily. But that Thursday, I noticed – there had been NO change in her & I was concerned. There must be another doctor I could call. So I called the pediatrician (who admitted Maggie to Fairfax Hospital) and asked her for another pulmonologist’s name. She said “If I am that concerned, bring her in.”  So I did. Again, I sent my older 2 sons to the neighbors (thank God for good neighbors!). 

The doctor didn’t like the way Maggie was semi-unresponsive and decided to put a pulse-ox monitor on her. It read 84%, which to me means “Oh crap!” To the doctor and nurse, it meant “Call 911.”  So, again, I was panicking and crying, unsure of what was going on. We were sent off to the local ER to be stabilized (again, rampant with the flu & H1N1, which probably could have killed this baby).  

Since we had already been to the closest “specialist” hospital, we needed to make a choice where to go next. The only place I could think of was Children’s National Medical Center (CNMC) in Washington, DC.

At 2 am, after switching places with my husband, Maggie was transferred to CNMC by ambulance. She immediately had a spinal tap which revealed nothing. She was hooked up again to the NG tube and oxygen, but this time was placed into the NICU’s care. She was the biggest baby they’d ever seen. She was there for the next 2 weeks, for her first Halloween and a few days following. There were tests and more tests and many sleepless nights. My husband was working full-time, so he would usually take the night shift, while I would come in to the city after rush hour & stay all day. We never left her side. 

November, 2009 - One Month Old

On November 5, she was released on ¼ liter of oxygen, nightly NG feeds to raise her calorie intake which would help her (and her lungs) grow, nebulizer medications (Pulmicort and Atrovent), and Prevacid since it was found that she had acid reflux. We were still no closer to a diagnosis and just had a routine to keep her status quo with frequent follow-up appointments.

On December 22, Maggie had a VQ Scan at CNMC, which showed “possible” congenital lobar emphysema. She did not fit the profile for the disease, but it was suggested.

February, 2010 - Four Months Old

On Saturday February 6, 2010, 36” of snow fell in our area. Maggie’s condition was declining. She was coughing a lot and just wasn’t her normal, happy self. My husband and I decided to give her one final nebulizer treatment before making the decision to call 911. Thankfully, our road had been well-plowed earlier that day so the ambulance and life support trucks arrived quickly. 

Maggie was taken to our local hospital & put into a room on the pediatric floor. On Monday, February 8, 2010, the decision was made to transfer Maggie to CNMC. However, our area was expecting another 15-20” of snow that evening. At 1 pm, the decision was made that she would be airlifted to CNMC. Unfortunately, I could not travel with her, so I waited for my husband to pick me up to take me to DC to be with her. As soon as we crossed into DC, I received a call from the Flight Nurse who said “Maggie’s condition worsened and we needed to intubate her.”  While I knew it was a possibility, I still didn’t expect it. 

We rushed to her side in the PICU pod (6 beds in a large room) where she was on a ventilator and had tubes going everywhere. It was the scariest time in my life.

She was found to have “Human Meta-pneumovirus" (hMPV, which is very similar to RSV). On Saturday February 13, 6 days after being intubated, I had a long talk with the doctor about Maggie. I thought this was “the end”. How could I keep my child on a ventilator? What quality of life was this? 

The doctor, probably wanting to slap me, talked to me directly “We are talking about one organ, we can handle this. She can handle this.” 

That being said, I had a big heart-to-heart with Maggie on the eve of her 1^st Valentine’s Day. That next day, after morning rounds, the doctors and Respiratory Therapists (RTs) started extubation readiness testing on Maggie. She failed the testing, but they decided to extubate anyway. I had to leave the room, I was so scared. My husband stayed. He said that she coughed and immediately her oxygen level was up and she was awake and was the most beautiful thing I had seen in my lifetime! She was released 1 week later, but again, we were no closer to a diagnosis.

March 2010 - 5 Months Old

In early March, Maggie contracted rhinovirus (a cold to you & me) and was again, hospitalized on the pulmonary care floor for 1 week. At this point, I was done. I started doing research. Where is the BEST hospital for our child? The answer; clearly was Children’s Hospital of Philadelphia (CHOP). On CHOP’s website, they list their doctors and their areas of specialty. I found one, Dr. Howard Panitch, who specialized in Infant Breathing Disorders. That was the one I was going to try & contact, so I wrote him a letter. He called me about 4 days later and told me that he had set aside a full-day for Maggie on Wednesday March 31, 2010.

My husband and I set out for Philadelphia on Tuesday March 30for the night. Our first appointment was at 9am for an infant breathing test where Maggie would be sedated and studied. Following that was a CT scan with contrast, cardiology work-up, and so on. By 1pm, all of the testing was complete. By 3pm, we had a DIAGNOSIS and a PLAN!!!! She did, in fact, have Congenital Lobar Emphysema, affecting the right middle & upper left lobes. We would meet with the Cardio-thoracic plastic surgeon in the morning and discuss our options.

The next morning with the pulmonologist and the surgeon, we decided that we would wait for surgery, unless Maggie was to get sick again, in which case we would schedule the surgery as soon as she was well-enough to do so.

A few days later, Dr. Panitch called and said that the emphysema was evident in the very first CT scans that Maggie had, 1 week after her birth. That comparison with the more recent CT scan showed that the emphysema was mainly in the right middle lobe, so that was what we would target should she need surgery.

In April, Maggie was diagnosed with Parainfluenza and was intubated again for 6 days.

She was released 1 week later from CNMC. During this stay, we discussed the situation with Dr. Panitch and surgery was scheduled for June 23, 2010 in Philadelphia. The right middle section of Maggie’s lung would be removed and her recovery was expected to be similar to her stays at CNMC: ventilator for about a week & then rest for a week before going home.

June 2010 - Lobectomy at Last!

My mom and I arrived in Philadelphia on Monday June 21 for Maggie’s pre-surgery testing. My husband arrived on Tuesday June 22 for pre-surgery doctor’s visits. We awoke (after a restless night) and headed to the hospital for the surgeon’s second surgery of the day at 10am. 

Pre-op took forever! Maggie didn’t get back to the OR area until about 12:30pm. We were then told that the surgery would take about 4 hours. At 1:30pm, the nurse came out and told us that they just took her into the OR at 1:15pm. So, we grabbed lunch and came back, waiting as patiently as we could for news. 

At 2:30 pm, I headed towards the restroom, but saw Maggie’s surgeon heading towards me. I was a little freaked out. She said to come back with her to the waiting room. I followed & she proceeded to tell us (me, my husband and both sets of grandparents) that Maggie was doing great, surgery was complete.  They extubated her immediately and she was breathing fine on her own and her pulse-ox was between 97-100%. We would be able to meet her in the NICU where she would stay for the rest of her stay in about 1 hour. The relief was pouring out of me! I was overjoyed!

Five days later, I took Maggie home and today, she is 2 1/3 years old & amazing. Except for a small incision scar under her right arm, she is no worse for wear.

Today, at 28 Months Old

Maggie was able to discontinue all of her reflux medications in July 2010. Her nebulizer medications were stopped in November 2011. She runs, jumps, swims, and tries to catch up with her big brothers who just adore her. We are blessed every day to have met all of the people we did, that we learned what we learned about “infant breathing disorders,” and how you need to be your child’s advocate and not accept anything but the best care, and most importantly, how our daughter beat the odds!

Maggie at 2, precious and perfect.