Caroline was my first born. I had a truly perfect, nearly ethereal pregnancy (I think it came from her). When she was born on April 17th, 2000, our doctor told us she appeared to have Down syndrome and a heart problem. (They had rushed her to the neonatal intensive care because she was turning blue). We were absolutely devastated. Why had God brought this upon us? Weren’t we good people – why did this happen to our little girl? We had done everything right and I had been so healthy – where was our baby, the one we were expecting?! We have 13 healthy nieces and nephews, how did this happen?? We cried the whole day. Suddenly, we had to digest the news our baby would likely never marry or have children … would she be able to go to school, drive, ever be independent? It’s the death of a dream, the child that will never be. But we slowly picked ourselves up, and thank God, truly learned to accept her and love her just the way she was & wow, Caroline was an awesome little girl. We also met some wonderful families through our local support group, the Triangle Down Syndrome Network. They offered so much insight, love and most of all, hope! Caroline was totally sweet & had a great giggle and could be so feisty! People were very drawn to her, and were always wanting to hold her or asking to baby sit her – Caroline was like a magnet that brought out tremendous amounts of love in everyone, even strangers, and we just adored her.
Her heart defect was complicated and she had her 1st surgery at 21 days of age because she was experiencing congestive heart failure. (This procedure placed a band on pulmonary artery to lessen the flow of blood to her lungs & stop the saturation that was occurring). We finally got her home from the hospital for the 1st time at 30 days old. We couldn’t wait to get her outside in the fresh air & sunshine! With lots of love & even more patience, she began to thrive! (She had developed feeding problems after being tube fed her 1st month, and oh what an ordeal to teach her to eat. There were moments we nearly wanted to give up, which would have meant going back on a feeding tube – thank God we made it through somehow). She grew & had rolls of baby fat, sweet smiles, cool noises – she looked so healthy from the outside! She was even sitting up at 6 months (even though it must have been so hard with such a bad heart – we can never know how difficult it must have been for her, how tired she must have felt.) The months prior her 2nd surgery were filled with sweet, treasured memories of her Christening, Thanksgiving, Christmas & all the wonderful little things, like giving her baths, her playing peek-a-boo with her blanket, holding it so her little pinkies were always sticking up, and watching her reaction when she tasted new things! We also had excellent doctors and great faith in their abilities. (But unfortunately, as we discovered, doctors can’t fix everything, even though we live in an age where we start to believe they can. They only do the best that they can do). Don’t get me wrong, we fully expected that after the surgeries were complete (she was expected to have 3 surgeries before 2 years of age) that she’d have a full life. We visited her cardiologist monthly (Dr. H.) and he marveled at her progress. From the outside, she looked wonderful!! We never thought we were going to lose the war, never. We felt if we did the surgeries, we were home free. She was getting really tired by December, so after she had a cardiac catheter, they scheduled her 2nd surgery for January 17th, 2001. The surgery (a procedure called the "bi-directional Glenn Shunt" ) was "successful" and she came home 5 days later. We were thrilled and thought that meant everything that she came home so well & so quickly. However, weeks went by and our little girl was still not herself, her appetite was still lighter, she seemed irritable, even depressed…. Then, she started developing fluid in her lungs & the doctors increased her Lasix medication to help shed the excess fluid & indicated it was not an abnormal reaction, but warranted watching. On Friday, February 23rd, I was back at work and just felt my little girl needed me, so I asked my boss for a few days off the following week. I thought she just needed some extra Mommy care & loving & that of course, Mommy would fix everything. I felt, if I can hold her enough & love her enough, everything would be okay.
By Monday, the 26th, her appetite had pretty much disappeared and our baby girl was so tired. I took her to ER; fearful she was going into congestive heart failure. After hours of study & x-rays and an intra-muscular shot of Lasix (she was too puffy so they couldn’t find her veins to give her an IV) – the pediatric cardiologist on duty (Dr. C.) gave me a choice of taking her home on more Lasix and another diuretic, or admitting her. I asked, which way would work better for her? He said 50/50 – well heck, I took her home – she didn’t need more needles and nurses if he felt she’d recover just as well at home. We felt so relieved that she was going to be okay! (Dr. H. later told us he personally has never given a family a choice – and I attribute this to Dr. C. being less experienced, and wanting the family to share more of the burden of decision than was appropriate. I wonder if he’ll ever make that mistake again? My Mom felt that perhaps even Monday was too late, perhaps Caroline’s heart was so weakened that she would have spent her last days hooked up to machines in a hospital instead of home with her Mommy & Daddy. Then, we are grateful for the way she died, if she had to die. We feel that God & the angels made it as "easy" on us and on Caroline as it could be.) She seemed better Tuesday, but not as good on Wednesday. She had another checkup with one of the more experienced cardiologists that day – he seemed a little flustered (which was not like him), and started saying we might need to do another cardiac catheter to check her pressures, possibly chest tubes or another surgery. He told us to bring her back on Friday and not to be surprised if we had to admit her. I left there very anxious & ended up taking Caroline to St. Raphael’s – I can’t remember the last time I had gone to Church on a Wednesday afternoon, but I felt I must! Well, there was a Children’s Mass that had just started because it was Lent (I hadn’t realized!) and she even received ashes from the priest that had baptized her in September. Our baby girl had a fitful night’s sleep on Wednesday & I ended up sleeping with her and trying to soothe her. Thursday, she stayed with Daddy so I could go in & catch up at work, expecting I would be spending the next few days in the hospital with Caroline. By Thursday evening, she just didn’t feel well at all & had eaten poorly– just wanting Daddy to hold her all day. We called ER on Thursday at 5:30 pm & gave the on-call pediatric cardiologist (yet another one) a summary of her week—he basically downplayed it, like we were over anxious and shouldn’t worry, just bring her in as scheduled on Friday. We said, we might still come in tonight, would he be there? He indicated he was home, but they’d call him if needed. Daddy gave her a bath & then I sat with Caroline on the couch and she actually had a little yogurt, which she savored. Then she looked at me with the most pleading, anxious eyes, it still burns in my memory – I said what’s wrong baby, what’s wrong?? I then held her on my chest where she dozed in & out. My husband came downstairs about 45 minutes later & turned up the light and basically freaked – for as she lay dozing on my chest, her color had turned – she was really pale but her lips were bluish!!! (Now I think, oh my God, my little girl lay dying on my chest & I didn’t even realize it. How could I have not known?!) We flew into the car to get to the hospital 40 minutes away –my husband said I was eerily calm, and I know, I really still thought it was going to be okay – I mean we’d seen all of these specialists, even yesterday, right?! So I sang to her & spoke to her and she was crying slightly, and just looking at me and wanting to sleep it seemed – but she was alive & she was there!! We got our little angel to the hospital; the nurse took one look at her & took off with her. Daddy followed Caroline & I had to sign into admitting. I still thought it would be okay, that they would check her in for a few days and get all of the extra fluid out. Suddenly, my husband came around the corner for me with a look of terror on his face, saying they can’t find a pulse!! I stared at him & it wouldn’t register, what?! How can that be, what are you saying?? And there was our little baby girl, on this huge table with 20 doctors and nurses around her, trying to bring her back; they worked for 35 minutes, never even a glimmer of hope. Caroline said 'no thanks; I’m tired, I’m ready to go home to Heaven. I’ve stayed as long as I can'. We know now that our precious girl stayed alive for us in that car, for she knew her Mommy and Daddy couldn’t take it if she’d have died along the way, she hung in there for us…. Caroline was officially pronounced dead at 9:32pm, on Thursday March 1st, 2001.
Afterwards, we held her for some time. She was so, so beautiful, like the precious angel she truly was. She looked so peaceful & her skin, which always appeared so mottled, was so fair and calm. But oh, how we could not leave her there! My sister came & cried with us. Dr. H. had been called & he came from home to be with us. He then told us some things he had never told us before – he felt our optimism had prolonged her life. He told us that he had never really thought she would even live to surgery. He told us that the fact that none of her holes had closed was usually an ominous sign. Sometimes I think I wish he had told us so we could have fought harder to prove them wrong – yet, could I have ever gone to work if I thought my life with Caroline would be so brief? Would we have treated her so typical, opening her life to so many people and experiences, if we realized how fragile she was? Dr. H. is a wonderful doctor & met with us weeks after her death to go over her history, what might have gone wrong. But when it all added up, it seems we were only prolonging the inevitable. Caroline had breast milk for 9 months and was able to stay home with Daddy who worked from home. What if she had been in daycare & been subject to so many germs, how much shorter would her life had been? We have played those last weeks over & over in our minds until we thought we could go crazy. We’re very blessed - we have a wonderful marriage and a loving family. But Caroline has left a hole in our hearts that will always be there. There are other things too - we know we were given a gift that she even lived nearly 11 months - even a few years ago they probably wouldn’t have even given us a surgery option on defects as bad as hers. It would have simply been compassionate care, letting her die when she was only days old. There were often times we felt a presence around her, and I know without a doubt, I felt it very strongly that last night of her life. Angels always surrounded her and on the night she died we felt them everywhere. We credit the angels with guiding me to take those days off from work to spend those last precious days with her – days I treasure so much now. I credit their guidance with my taking her to Church that last Wednesday. We will always yearn for her and, although it seems so unfair that this happened, we are so very grateful to God for allowing us to have her for the time that we did. We are so honored that God entrusted this gift, this little angel of His to us, even for such a brief time. At her funeral, a friend came to me with a message from her young son Thomas - he was very concerned & he asked that his mom "please tell Miss Liz not to be mad at God". What a sweet and faithful little boy. We sent her home with the message to please assure him that we weren't mad at God because He blessed us with Caroline in the first place- the miracle is that she was! We wouldn’t have traded a moment if it meant not knowing her at all. So we try to remember the wonderful, sweet memories. I kiss her photos all of the time & speak to her – she gives me good advice too!