Every now and then an opportunity will present itself and I will have to make a decision, do I fit one more thing into my already over-scheduled life or do I pass. I usually go with my gut reaction, is this something that excites me or was that my stomach I just felt clenching. I knew the proposition to visit CHOC was a unique one. How many times are you going to get the opportunity to see the inner sanctum of a children’s hospital with a camera in hand. Not many. I try to live my life from a place of YES and I try to accommodate as many requests as I can. I wish I could be in ten places at once so its times like these where I rely HEAVILY on intuition. From the moment I signed on to be part of this collaborative project I had no clue which direction to take. It wouldn’t be until the very last frame, image 358 that I would realize exactly why I was meant to be there.
These rare glimpses into something that is bigger than you or I, reaffirm what I already knew inside and that is that everyone has a story to tell. It’s during these moments when I am photographing a child whose future is uncertain that I know with every fiber of my being I am doing exactly what I am supposed to do, standing where I need to be, looking through a lens, capturing a moment.
I knew going in I would have a problem with this. Originally I was scheduled to shadow someone in the ER, but due some last-minute changes I was reassigned with Noel Besuzzi (one of my favorite local photographers) to the NICU. I could not tweet or update my facebook status about my whereabouts without getting weepy. As a mother of two I know what it is like to hear the cry of a newborn. There is something in our DNA as mothers that makes our ears hone in on the source of that cry, compelling us into action. I knew that seeing babies in distress would be worse but that is not what I saw at all, in fact all the babies I saw were swaddled and surrounded by a staff that I can best describe as stand in parents. They hovered, they adjusted, they stroked and they shushed. You could clearly see the love and devotion they have for each and every baby in their care.
When I was invited to bring my camera inside the NICU I knew from a photographers perspective the shoot would be technically challenging. The NICU has very low lights and obviously using a flash is strictly not allowed. I brought the fastest lens I could and set my ISO to 6400 (which photographers know is an extreme setting). I let go of the idea of getting a perfectly crisp shot and went for emotion and perspective and I got exactly just that.
I walked rounds with Dr. Dhar and CHOC representative, Denise Almazan, CHOC PR. Dr. Dhar is the Medical Director of the CHOC Neonatal Intensive Care Unit. To say I was in completely over my head (medically speaking) would be an understatement. I equate it to the feeling of a being a first year medical resident where all you can really do is observe and try to absorb every term and technique that comes flying at you. When Dr. Dhar asked if I knew what extra-corporeal membrane oxygenation was, I couldn’t even remotely pretend I had the slightest clue and like a true teacher he explained exactly what it did (oxygenates the baby’s blood until their lung function has sufficiently recovered to maintain appropriate oxygen saturation source) and why it was so important that CHOC remains one of the 72 hospitals in the country to have a ECMO machine. Tell me more I thought.
We continued on to each patient. I watched him examine each tiny baby while simultaneously questioning residents. He would present symptoms and my eyes would dart over to the attending resident who without as much as a slightest hesitation would throw back a list of probable causes, this was hands on learning at its finest and on limited sleep. Residents amaze me.
We moved through double doors that lead us to an area where the babies who have received treatment are recovering and stay until they are ready for discharge. These baby are noticeably larger (and louder) and with fewer constraints like tubes and wires. We watched as a baby was prepped for abdominal scope procedure that took place as we were there.
The noise level only allowed to rise to a muffled hush is constantly monitored by a lit sign in the shape of an ear above the row of bassinets. It’s very easy to forget to use your “library” voice when you are in the presence of doctors, nurses and staff buzzing around you. I tried my best to be a wallflower until I met the most wonderful couple and their son. They have taken up residence in the NICU for the past several months hoping to get the chance to take their first child home to his own crib that has been waiting for him since January. They welcomed me within their inner circle and allowed me to photograph them and sweet Brandon.
Brandon has Down’s Syndrome and was born with a life threatening condition, his esophagus was not attached to his stomach. The parents know no other life with a newborn then spending their days at the NICU and nights across the street at the Ronald McDonald house.
When I asked the parents how long they expected to be there, I immediately wanted to recant that question. What was I thinking. I don’t think anyone asks that question. I quickly learned you take each day as it comes and deal with what you have to on an as needed basis. When it is time to make decisions on the care and treatment of the child I sensed a very integrated approach with complete parental involvement. What a collaboration in care for these little miracles, every baby should be so lucky to be cared for the way they do at CHOC.
I stood there and looked around me sleeping babies everywhere, they looked so small and so peaceful I snapped a few more shots of these cozy little bundles and resisted my strong urge to cuddle them. I put my lens cap on and entered yet another labyrinth of hospital hallways and secured doors I was excited because I was about to get a peek at CHOC’s Small Baby Unit. I swallowed hard, I absolutely wanted to go but I wasn’t sure what I was about to see. Clutching my camera like a security blanket we tip toed in. Voices were lower, lights were dimmer. It was very quiet. Occasionally the sound of a muffled alarm would sound, heads would pop out of doorways to see who’s light was flashing. The Small Baby Unit was created a little over a year ago in hopes of providing those babies who arrive before 28 weeks and weigh less than 1000 grams. The idea was to provide an environment as hospitable or as close to as humanly possible to the feeling of being back in womb, after all most the babies in this unit should have been developing in utero for 3 more months.
We met with the head of the Small Baby Unit Dr. Hillyard, he sat down and talked to us about their approach to work closely with each baby and their parents and how crucial it was to the babies rate of improvement.
Each baby lives in what looks like a pod that lies within a cubical space. Each space is decorated with personalized name tags, signs and toys. Most of the babies were sleeping, as you can imagine. Some where close to or approaching what they call their zero birthday, the day they would have been full term. That is a big milestone. Most of the time that leads up to that is spent getting them to feed on their own. Even though they may seem like full term babies, albeit small they have not developed the ability to feed themselves and many of them will be released when they are able to remove the feeding tube and they learn to suckle.
The nurses were so friendly and willing to share a little about each to me. Some babies were there as a result of the mother becoming ill to the point of it being life threatening to either mom or baby others born with congenital defects that required an early entrance into this world followed up with future surgeries with robotic precision due to their size. The CHOC robotic surgery program is the second largest in the United States in freestanding hospitals. Amazing how much greater a chance these preemie babies have then they did a decade ago. Even with all the technology available to us there are still those babies who are born too soon and can not thrive. It breaks your heart to hear there is a baby in the unit in that very situation. What happened during the next hour will always stay with me.
Even though I was allowed to bring my camera into the hospital, strict patient confidentiality rules understandably prevent me from publishing what I captured that day. My intention was to take photos of the experience and share individual images with the parents so they had these moments documented. Some families we met were willing to share their experience and they have been included above. Others I have not met but I hope the images they will receive help them in some little way. Through my visit to CHOC I have found a way to give back. Spending an hour with a couple and their precious baby on life support was something I will never forget. To be in the presence of this child and the parents who showed grace and strength beyond their young years reaffirmed that I was supposed to be there that day. Everything led up to that one perfect frame, my very last image shot, #358 a tiny hand wrapped around the tip of the fathers index finger.
I would like to thank Dr. Dhar, Dr. Hillyard, the friendly NICU nurse staff, Denise Almazan, Suz Broughton and the parents for allowing me the opportunity to be in the presence of true miracles.