Two and a half months we spent in Children's. Seemed like an eternity at the time. I have no idea how those parents who spend six months or a year do it. Especially the out of towners. We could at least sleep in our own bed every once in a while.
Coming home was difficult at first. Even though we were Max's basic daily caregivers in the hospital, there was always someone to back us up there. But at home it was just the two of us. And after Gita went back to work, just me. The first couple of days were very tense. Every time she coughed we had a thermometer in her. But slowly we adjusted and before too long, we settled into a rather comfortable little 'menage a trois'.
We had decided that I would become a stay at home dad before Max was born. While I enjoyed my job immensely, I just did not make enough money to justify remaining there. Then when she popped out with Down Syndrome, it became even more evident that I would be needed at home. (Secretly, this is something that I had fantasized about for years. Ever since I watched my friend Bruce raise his two boys.) Max would have at least two doctor visits a month and be seen twice a week by the early intervention team from MARC (The Arc of Montgomery County). Add to this mix the five or so medications she took every day and the frequent eruptions of Mount Vesuvius, and the idea of daycare is pretty much out the door. Like we could have found someone, anyway.
Let us recap. One daughter. Three surgeries. Two and half months in the hospital. A boatload of doctors. A tube up her nose to put food in and a bag on her belly to take it back out again. Wow. I was the luckiest man on the face of the earth.
I cannot begin to describe the joy I felt. I was so in love. We would go shopping together, NG tube whipping in the breeze. We'd go for long walks and she'd be all scrunched up in the jogger cause she was so little. We'd play with her silkie (an old pair of my silk boxers). We'd practice rolling. And we would try and use a bottle and end up just making a mess. This was Nirvana.
Like all new found moms and dads, we could not wait to share the news. We probably should have waited a bit longer to tell others. At least until we knew that the baby would be healthy and there was less chance of miscarriage. But joy overtook us and we told everyone that would listen. Gita had decided to use a mid-wife. I was not to pleased at first, but as we got further into the pregnancy, I became used to the idea and eventually embraced it. Because of Gita's age, we had been referred to an ob-gyn for additional checkups. At the second or third ultrasound, some excess fluid was found in Maxine's urinary tract. While out of the ordinary, it was not uncommon. To be safe, they would follow with level two ultrasounds. It was also about this time that we received our first 'genetic counseling'.
Genetic counseling should really be called "If your kid comes out funky, don't sue us because you are really old and your eggs are probably way past the expired date stamped on your butt" counseling. Numbers fly around the room like flies near roadkill. After a while it sounds like an auction.
"What am I bid? What am I bid?! Do I hear 1 in 500 for Trisomy 21? Thank you sir. I have 1 in 500, will someone make that 1 in 400? 1 in 400? To the old lady in the rear, I have 1 in 400. Come on now folks, 1 in 300 for Down Syndrome is a bargain! Do I have any bids at 1 in 300? No sir, I'm sorry, we are bidding on Trisomy 21 only today. Stop by tomorrow, when we will begin our highly regarded 22Q deletion sale! What am I bid? Do I hear 1 in 300. . . . "
Being kind of starstruck about the whole baby thing had kind of blinded us to the fact that we were not young 'uns anymore. And as older parents, our chances of a chromosonal defect were higher than those younger than us. But still, one in four hundred sounds like a long shot to me. Or at least it did then.
I cannot remember when or even if we actually discussed it, but early on we had decided that except for a condition that would threaten Gita's life, we would not abort our child. We are not pro-life. We still respect the right of a parent to choose his or her own fate. But something had been given to us. Something very special. We decided that no matter what we were given, we would do our best to love him or her to the best of our abilities. Very noble of us, don't you think?
At the next ultrasound, we found that the urinary blockage was gone. Hooray! Except now there was a new backup. This one between the stomach and duodenum. Double bubble. Duodenal atresia.
We now received a second round of genetic counseling and were asked if we wanted an amniocentesis. We declined. We figured that if the result was not favorable, we might second guess our decision to have Max. And by not knowing, it kept alive the hope that the ultrasound was wrong and that our little darling was perfect. One can dream. We were told that a natural child birth was still OK, but that a hospital setting would be more appropos since she would have to be taken to Children's Hospital of Philadelphia (CHOP) for her surgery.
Late in the third trimester, we took a trip to CHOP to meet her surgeon and have a fetal echo done for any possible heart problems. We also took a tour of the Neonatal Intensive Care Unit (NICU) that we would be interred at during our stay. The good news was no sign of a heart defect. The bad news was we were looking at a two to three week stay in the hospital. I remember my knees buckling when I heard that. It was such a scary place with monitors and tubes and beeping all in one big room. The thought of spending that amount of time there was horrific. The nurse practitioner who showed us around introduced us to a parent whose child had undergone a surgery very similar to what ours was to have. I could not believe how such a tiny little child could be sliced open. I was repulsed by her baby with all its tubes and bandages. We left. Shaken and scared but not deterred.
Despite the fact that I am trained as a photographer/filmaker, I just could not bring myself to photograph the birth. In retrospect, I am kind of glad.
Gita called me at work to tell me that contractions had started. No rush yet as they were pretty far apart. When I got home we called our mid-wife and were informed that she was off that weekend. Her backup would fill in. So we talked to the sub and she was not thrilled. It seemed that she had a scheduled birth for six a.m. the next morning and did not relish the thought of being up all night with a couple of rookies. We finally convinced her to meet us at the hospital as Gita's pain was growing stronger.
Despite what you may read or hear, the birth process is not pretty. As a matter of fact, it is rather loud and disgusting. At least if you have my mate and you use a mid-wife 'au natural'. Yet even with all the screaming and not being very useful, I am so glad to have been there. Gita was in labor for only about six hours. Maxine came forth around midnight.
The hospital had a neonatal specialist on hand to inspect Max before her trip to CHOP. "She has Down Syndrome", she told me as they cleaned her up and checked her vitals. She then started to point out the details. She showed me her simian crease on her palms and how her fingers were on the shorter side. I remember not being upset, but a little let down. Despite all the ultrasounds results, I still held out that the du0denal atrestia was the only problem. Boy, was I in for a surprise.
So we got to spend about an hour with her before the transport team from CHOP arrived to take Max. I could not believe that I helped make this little blob. She wasn't cute yet. But you could see the potential.
Ain't she cute? Hard to believe she is dead.
Welcome to Maxine's site. She was born on April 3, 1999 and she died on January 23, 2000. You can do the math. We have put this site together for people to learn a little bit about a kid who was a little less than perfect, about what real love is, and also to try and explain what real pain is. We think we can do all right on the first one, and maybe passable on the second; but I doubt if I can teach you about even a small fraction of the last. It is probably better that way. No one should have to feel what we do. Not for one minute. Not for a million lifetimes.
Not everyone will like this site. There will be some inconsiderate words and some harsh images. We are not out to sugarcoat anything. But remember this throughout your visit: We have never, nor will ever again, feel a greater love than that which we have for our daughter.
You can navigate this sight two ways. If you put your mouse over the flower next to a heading, a new layer will pop up with a photo and words. Not all browsers support this however, so if you click, you will be taken to a page with the same stuff but (hopefully) a couple more photos.
To know Max, you will have to start by learning something about the two of us. This is from several years and pounds ago. On our wedding day. Way before Max.
My name is Bobby Sapovits and my wife is Gita Estersohn. We met about a dozen years ago through a friend of mine. He called me the day after he met her and said he had found my long lost sister. We spoke on the phone a couple of times and the rest (as they say) is history.
When we met, I was managing a bicycle shop in Philadelphia and Gita worked in the reinsurance trade. (Please don't ask me to explain what that is.) We moved in together after dating for two years. We bought a house in the suburbs. We got married the following year. We were both in our mid thirties.
Children were discussed but we had no compelling reason to go at tooth and nail. We had actually had a long discussion just before we found out we were pregnant and had agreed that we would have just as good a life without a kid as with. So while we watched the phases of the moon, we did not seek medical help in our attempt at getting knocked up. It wasn't long after that the rabbit died. Or in the more modern venacular; the line turned blue.
Our relationship was (and still is) one that is built on friendship. As friends, we know how to talk to one another, how to listen to one another, and how to give each other the space that we need to be ourselves. We love each other very deeply, but not cloyingly. After living with Gita, I now know what 'soulmate' truly means. I feel truly blessed that we had found each other.
I was a little upset. No one had told me I could ride with Max down to Children's in the ambulance. That would have been cool. Instead I went home to grab a couple of hours of shuteye. Gita decided to stay at the hospital for a while and rest. One great advantage to using a mid-wife is they want you on your feet in a couple of hours. So getting Gita discharged to go see her new daughter was not a problem. When a doctor drugs you up to deliver, they are not letting you out until they're good and ready.
We got down to CHOP and the fears that we had felt on our first visit were starting to resurface. The Neonatal Intensive Care Unit (NICU) consists of about six large rooms with about six beds per room. In addition, there are some isolation units and they always seem to find a way to squeeze in another crib or two. Basically a population of about forty babies. And only babies. The oldest one in there is three months in most cases. Exceptions are the 'long term' residents. It is not unheard of for a newborn to spend the first year of life in the NICU. Add to the mix two parents per child, one nurse per two infants, and the usual assortment of doctors and other hangers on; and you can see it is a very busy place. They had placed Max in the back room, which in hindsight is one of the nicest since it is a corner and you get two walls of outdoor light coming in.
She was in a warming crib, which has a heating element to keep her at a comfortable temperature without using any clothing. Easier to deal with the lines and tubes and whatnot. She was so small. And scrunched. Her face had this look of a flower that was not quite open yet. Max had emerged into this world with a full head of hair and it was a mess. A lot like her dad in that respect. I wish I could tell you how much I loved her at this point but the truth is I was not sure of whether or not I could love this wrinkled little mess.
We learned at this point that her surgeon was off for the weekend and she would be getting his sub. What was with this girl? Couldn't she get a starter for anything in her life? (As it turned out, I would not have traded either her mid-wife or surgeon for any other, including the ones who were supposed to do the job.) She went into the operating room around dinner time and came out around ten.
Her doctors informed us that everything had gone well. Duodenal atresia is a blockage between the stomach and duodenum. In the old days it would have been diagnosed by a baby constantly vomiting and never having a bowel movement. Because of its proximity to the bile duct and other important fixtures, it is not removed. Instead a bypass is formed around it.
We met Maxine back in the NICU. Now my daughter was looking scary. She had a line to her spine to carry the epidural, an NJ (naso-jejunum) tube for feeding, another next to that for drainage, a broviac line for meds, a canula for oxygen, and the usual assortment of wires to monitor her. It made it difficult, if not impossible, to hold her. To top that off, she was asleep most of the time. While it may have been good for her, to bond with a child that you cannot hug and almost never sees you is a difficult task. In a real world context, watching a baby heal is lot like watching paint dry.
Over the next couple of days, we began to start to fill a little more at ease in the NICU and with Maxine. Her doctors said she was pretty much on schedule for healing and were pleased with her progress. The nursing staff was incredible. They did everything they could to get her into our arms and make us comfortable. I cannot begin to tell you how much we owe them. It was also about this time that I realized how much I loved this crumpled wad of flesh and tubes. Holding a child can work miracles. We actually started to think of going home. If only she would not breathe so fast.
Tachypnea is rapid breathing. They were having problems in weaning Max off the oxygen. Her rate was easily into the 100's and anything over 60 is considered suspect. We were now being visited by a new set of doctors. I kept telling them that her heart was fine. It had been checked during a fetal echo just a week before her birth and the d0ctor had assured us that there were no holes. At least larger than 5mm.
I remember her first echo as clear as the day it took place. I remember it so vividly because of how scared I was of its outcome. But mostly I remember it because the doctors performing the test did everything they could to keep us out of the loop. They talked in low whispers between themselves and blocked the screen from my view. They kept pointing at the monitor and murmuring obscure terms. And thus began what we now call 'The March of the Cardiologists'.
Maxine's heart did not have a small hole. It had two huge holes. And instead of two lower valves, she had a large common one in their place. AKA: complete atrioventricular (AV) canal defect. In essence, the entire center section of her heart was missing.
To say I was angry is a gross understatement. And while I understand now that diagnosis of conditions like this are not perfect, it seems to me that this was not an 'oops, sorry' situation. But then, no one ever did say to us, 'oops, sorry'. Instead they threw a lot of statistics and terms in our face.
We saw over seven different cardiologists before Max had her surgery to correct the defect. And never did they say the same thing twice. We went from "we'll treat her with meds until she is six months old and then do the surgery" to "what do you mean 'six months'? she's having this surgery next week". They even over medicated her and shut down her kidneys, adding a few extra days to our visit. I had begun nicknaming the cardiologists we saw after the seven dwarfs, but stopped because I like the seven dwarfs.
When we finally had time to pull in our wagons and survey the landscape, it was evident that Max had to have the operation. My cousin, doing her surgical residency at Boston Children's, confirmed "the sooner the better." We moved up in the world. To the sixth floor and the Cardiac Intensive Care Unit (CICU).
By this point, we had become pretty familiar with the NICU and its staff. We had become acquainted with some of the other parents and many of the nurses. In an obtuse way, we were comfortable. The CICU, by contrast, turned all that on its head.
Doctors. Doctors everywhere. All of them reading charts and looking very concerned. Most were students. All of them were a pain in the ass. The same questions over and over again. Don't any of these people read the charts? We shared a room with three other children, and Maxine's problems were nothing compared to some of the other kids. Hypoplasia and a heart lung transplant make AV canal defect look like a cold in comparison.
During the consult with Maxine's surgeon immediately following the operation, he warned us that he had some problems with the reconstruction of the valve. This became more apparent later as her tachypnea was only slightly lower than before. Still, there were some definite signs of improvement in other areas. Her repaired valve now had a very distinctive murmur; one that even I could hear clearly. They used to send the first year med students over to get a listen since it was so distinct. I began to refer to Max as the 'Whirlpool'. But despite the big red zipper on her chest, she was a little better and seemed to be improving more each day. I just wished she would take a dump.
It seemed to us that in the CICU, if it didn't have to do with the heart, it just was not important enough to worry about. We had asked for someone to look at Max. It had been over twenty four hours since the surgery and she had not pooped yet. "It's just the anesthesia", they told us. Yea right.
They finally moved us back to the NICU. Max was back with her buddies, Sara (also DS) and Conner (premie, trach, and yet to be discovered wonders). Her bowel movements were at best, sporadic. But at least she was being cared for by doctors that knew a lot about body parts other than the heart.
I remember sitting in the hallway and one of Max's general surgeons came out. I was pretty frustrated by this point and started peppering her with questions about what was wrong with Max. Why doesn't she poop? Is she just constipated? Is it the anesthesia? What!? And then I ask her, "What if it's Hirschsprung's Disease?"
"Oh, it's not Hirschsprung's", she answers.
During my early research into Down Syndrome, I had come across Hirschsprung's Disease and was very bothered by it. Not by what it was or it's outcome, but by that name. Hirschsprung's Disease. Say it. Out loud. It is a very scary name. Not something that anyone would want to have. Or thier child.
Max had Hirschsprung's. It was confirmed with a biopsy a couple of days later.
During the formation of the fetus, as the nervous system is developing, neurons 'migrate' down the gastrointestinal tract. This is the system that moves the food along until finally discharged at the other end. In Hirschsprung's the neurons never make it to the end of the line. Imagine a trolley route that is missing the upper wire for the last mile. And the trains don't stop coming. Sometimes the trains in the back can push the lead trolley out. But most of the time, it is just one big pile up.
I was almost relieved. I am a strong believer in the rule that says that trouble comes in threes. And with the diagnosis of Hirschsprung's, Max had hit the magic number. That's it. We're done. Buh-bye. One more surgery and we are outta here.
Well, actually two. Possibly three. The procedure goes like this. Disconnect the lower GI from the rectum. Take a slice and send it to pathology. Count the neruons. Not enough? Take another slice. Keep going until you find enough neurons to do the job. Take remaining bowel and splice into the stomach wall, forming a colostomy. Wait several months for healing and to confirm good bowel movement. Go back and reattach colon to rectum. Simple.
One of the great benefits of going through a hospital trip like this is that nothing grosses you out anymore. Things that would have made me vomit before Max was born were now routine. In a way, I wish everyone could experience it. It allows you to look not at the condition, but at the person afflicted with that condition. Still, in retrospect, Maxine's colostomy was pretty gross. Her doctor had not done a cosmetic blending with the abdominal wall since he would be reattaching it in a few months. We named it Mount Vesuvius.
Max became a much more likable baby after the colostomy. She was able to poop with the best of them. It just came out a little different. A little under a week later, we went home.